Newark takes on Alzheimer’s

My story for Brick City Live about a pioneering program in Newark:

Certified Zumba instructor Crystal Gaynor leads a class as part of the African American Brain Health Initiative. Photo courtesy of Crystal Gaynor

Newark takes on Alzheimer’s

 

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Romeo’s Book Sheds Light on Dark Subject of Grief

“Grief does not change you, Hazel. It reveals you.”
― John Green, “The Fault in Our Stars

As many of you know, I lost my beloved husband, Walter Lucas, to complications from surgery in 2004. He was in his forties and deep into an amazing, audacious career as a civil rights attorney. I am not “over it.” I never will be.

Grief is a mystery, poorly understood.

American culture offers precious few rituals to assist us in walking that walk. As a practicing Roman Catholic, I am fortunate to have had prayer to support me as well as the conventions of wakes, a funeral Mass, and burial service. And, to be sure, kind people have reached out to me and our 3 children over the intervening months and years. But, other than Swiss-American psychiatrist Elisabeth Kübler-Ross’s “five stages” pointed to by so many, there have been — for too long — few cultural guideposts to help me and many others along this taxing emotional corridor.

Lisa Romeo’s new book, “Starting With Goodbye: A Daughter’s Memoir of Love After Loss,” (University of Nevada Press) is an excellent entry in an emerging cadre of books addressing America’s knowledge void on grief. Romeo, a gifted writer and editor who lives in Cedar Grove, N.J., with her husband and two sons, tells the story of her own journey through grief after the death of her elderly father, Anthony Chipolone.

Through the power of her writing, the reader joins Romeo on an odyssey where, through memory and reflection, she comes to a new appreciation of her workaholic, seemingly distant father. She develops deeper insights about their relationship. She comes to see his genuine love for her, her mother and siblings, and a larger, extended family.

Honesty is at the core of Romeo’s book.

The one-time journalist and public relations professional notes that over the course of her career she has written stories about so many people – most of them strangers. “Something else was going on,” she writes as she struggles during the act of writing her father’s eulogy. “With the first stroke of the pen, it occurred to me it was the first time that I’d written more than a line or two about my father.”

When she thinks of her father, she realizes, it has often been through the lens of her girlhood and young womanhood when she was under his care and well-to-do and carefree. Her present life, as a working parent, offers a stark contrast to her past. She writes of her “now” this way:

…the nervous mother of two sons, a strong but always fretting advocate for the one child with special needs, a workaholic, budget-watching worrier in six-year-old shoes scrambling each month to stretch her husband’s modest paycheck and her unpredictable freelance income. (She was) pondering how to balance admiration for a father everyone called ‘a prince among men’ and the enigma she knew.”

She resists the impulse to recast the past and portray herself as a saint. She recalls visiting her father in the hospital before he dies and, noticing his fingernails are ragged, vows to bring manicure tools the next day. But, she admits, tomorrow dawns and she forgets the kit, and continues to do so on successive days. At the end of one trip to Las Vegas, where her parents relocated in retirement from New Jersey, she knows she has enough time to drop in on her father at the hospital before returning to the airport. But she remains in her hotel room. It’s not an accident. “I choose not to go,” she writes.

Sometimes, especially during family crises, relatives can bicker. When Romeo’s relatives get on her nerves during one of her father’s hospital stays, she shows her emotions. “At the moment, their reaction makes me want to put my fist through the room’s clean, wide window all the way to the Black Mountains in the distance.”

Such details do not take away from the fact that Romeo is a dutiful, loving daughter and sister. Instead, Romeo shows herself to be mortal, and that makes her relatable.

Romeo is a beautiful writer. On a quiet Friday afternoon, “the autumn crispness winks,” she writes. And, as she describes what she was doing when she learned her father died, she illustrates  her talent for connecting the big picture with the not-so:

“When the news came on television that JFK was shot, I was playing with Tinker Toys on my living room floor. I heard about the Space Shuttle Challenger exploding on the radio in a taxi on my way to the World Trade Center, where I was meeting my cousin for resume tips. I knew I was wearing green pants and a white flowered shirt when I found out I was pregnant for my first child. On September 11, 2001, I was doing a dinosaur puzzle on the family room floor with (her son) when my friend Rita called to say, ‘turn on the TV!’”

She shows the reader what grief can look like. In the aftermath of her father’s death, she is either scatter-brained or hyper-focused. Sometimes, she quashes her sadness and becomes super-organized, making lists, and lists of lists.

She is struck by bouts of weeping, when surrounded or alone. She conveys the shock of knowing that, with her father gone, she now only has one parent left. That her mother’s life with her father is over. That everything will be different. And, worst of all:

“My father, whom I never knew very well, is gone, and now it’s too late to know him.”

The author, Lisa Romeo.

In grief, objects often speak to us. After the funeral, Romeo looks at her father’s closet, filled with beautiful, pressed suits he will never wear again. She stares at the neatly folded pants she bought him the Christmas before, ones her mother said were his favorite. As she departs the Salvation Army depot where she donated most of his beautiful clothes, crunching them into black garbage bags, she will regret not keeping one suit – for memory’s sake. And she will recount the surreal sensibility that can accompany those in the clutches of mourning:

“I will remember driving away, turning off the air conditioning, opening all the windows, letting the dry broiling heat and sand in, helping me feel grounded somehow, as if what I’d just done was good or real.”

What saves the day for Romeo are “visits” from her father – interludes after his death when she imagines talking with him. She knows she isn’t crazy – and she doesn’t care what people think. These are therapeutic “chats,” catching up, exchanging quips, taking place in his old office or at her kitchen table when she is alone late at night. And she often comes away better educated, her heart warmed.

For Romeo, that’s when the healing begins. She starts to read her memories differently, see things from a parents’ perspective, understanding her father on a different level. She reflects on his longtime habit of moving through a room, adjusting and repositioning items, and how she used to think the behavior indicated that either he wasn’t interested in what she said or he was consumed with his family role as the one who must ever fix things:

“Only at the end-no, past the end-do I really see that it all was just his way, and not judgment, not passive-aggressive reproof. I imagine him even now, wandering…finding me at the desk, fingers on keyboard, and asking me what I’m working on, saying, ‘Humph,’ and on his way out, arranging the spilled contents of my travel toiletries bag in a pleasing order.”

There is so much in this book. Romeo describes the negative effect her father’s death has on her mother, who was so dependent on her spouse when it came to matters of the world like budgeting or household repairs. Romeo relates details of some her own struggles in her home life through the span of her father’s illness and death and how her husband helps her balance the many demands on her.

Romeo has a big, questioning mind and, though you will be sad for her loss, you will enjoy walking the walk with this thoughtful, loving, intelligent person. I know I did.

  • Kitta MacPherson
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A need for speed: How Newark’s fiber gambit could be game-changing

I am proud to be a part of Brick City Live, an award-winning hyperlocal news site covering the city of Newark. If you know me, you know I have spent much of my career in the state’s largest city, mostly at The Star-Ledger, still the state’s largest newspaper, and for the past three years teaching in the great journalism program at Rutgers-Newark. In the past year, I have also been advising student journalists at St. Benedict’s Preparatory School.

Here is my first story for BCL, as its roving business-sci-technology correspondent:

City of Light: Newark’s fiber optic gambit aims to boost opportunities for citizens and business

 

 

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Do Scientists Need an Ethics Code?

The turn of the year always brings along juicy lists to browse. As a list-obsessed person, I have recently read: Barnes & Noble’s “The 50 Best Works of Historical Fiction” (the Odyssey-inspired “Cold Mountain” by Charles Frazier is in there, along with books by Alice Hoffman and Philip K. Dick); Paul Rabin’s Top 25 Christmas Song countdown (including Lou Monte’s infamous “Dominick the Donkey”); “Critically Hated Movies that are Actually Awesome” (agree about “Constantine,” disagree about “The Cell”) on looper.com; the “Top 10 Modern Love columns of 2017” outlining some of the best entries appearing on the New York Times’ wildly popular page; and Business Insider’s “The most famous books that take place in every state” (New Jersey’s book is Junot Diaz’s “Drown.”)

But here’s one list that scared me, mainly because the larger roll it draws from keeps growing. The “Top 10 Retractions of 2017” was published earlier this month in The Scientist, a magazine for researchers in the life sciences. Among the transgressions reported are an effort by editors at the Journal of Translational Science in May 2017 to republish an already retracted study linking vaccines to autism. Thankfully, the article was retracted within days. Also painful is the instance of the Cornell University food scientist inventoried whose work this year generated 5 retractions and 13 corrections.

Perhaps most spectacularly unnerving is the action by the publisher Springer to retract 107 (yes, 1071) papers from the journal Tumor Biology. This occurred when editors learned that the necessary “peer review,” a central practice of science in which expert colleagues review research papers for key characteristics such as rigor, originality, and reproducibility prior to publication, didn’t occur. As a result, the Chinese government concluded that about 500 researchers it supported who were tied to these papers were guilty of misconduct. They have been temporarily banned from working at their universities and institutes while the government continues its investigation.

Why would the number of scientists who are making the kind of ethical boo-boos leading to retractions be on the rise? Isn’t it absolutely clear what their behaviors should be? Sadly, the answer is no. Unlike physicians, who swear fealty to the ancient Hippocratic Oath with its famous provision to “first, do no harm,” scientists do not follow any clearly defined universal code. Certainly, various associations and institutions boast ethical guidelines that members and employees are expected to follow. But a more generalizable one for the folks whose activities run the gamut from inquiries into dark matter to investigations into gene patterns? No.

In an article in Science Careers, the writer Beryl Lieff Benderly described the twin public benefits the Hippocratic Oath bestows on the medical community and the larger public. “The powerful, ancient ritual of publicly promising to observe a select community’s standards has long symbolized the intense professionalism that binds physicians. It also places the obligation to ethical behavior at the center of professional identity,” Benderly wrote.

Scientists for decades have been working to establish a codified set of principles for their community. Their ideas go well beyond setting an ideal for honesty in research and attribution, the behaviors where the retractees enumerated in The Scientist fell short. In journalism, we follow a code outlined by the Society for Professional Journalists. Imperfect as the public may think we are, we journalists know our rules and our values. The case may be similar for a scientific code of conduct — to be used successfully, it should be explicit in its values and be widely known and accepted. Some advocates also believe the existence of such a statement would re-establish bonds between scientists, connections that have withered over time under the forces of a commercialism that drives labs to be larger and subjected to intense pressures to produce results.

The idea of an oath or code of ethics has been debated in the scientific community for more than a century. Philosophers such as Karl Popper wanted to find a mechanism by which scientists would consider the ethical implications of their advances. Not all have agreed in the past or now that such an oath is needed. The scientific community, opponents contend, could never agree on the wording for an oath. Others even argue that each field in science is so specialized that a one-size-fits-all code could never be constructed.

The central issue for researchers seems to be deciding for themselves the answer to this question: Is the creation of knowledge separate from how it is used? The query can be applied, of course, to the discovery of the atomic bomb and the issue of whether the Manhattan Project researchers bear responsibility for the destruction that ensued. But the question is also deeply applicable today in an era when biologists are employing CRISPR technology, a simple and powerful tool for genome-editing, and artificial intelligence researchers are developing sentient systems. I would like to believe that such scientists are aware of the implications of their actions. But wouldn’t it be better to be sure?

Should scientists follow a code of ethics? I vote “yes.” Looking to the future, wouldn’t it make us all feel better?

Kitta MacPherson

 

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Moving from blue to green

Here, I read my essay, Groves of Green, published in the Australian literary journal, Koru.

I tell how an ancient tree, the metasequoia, and a scientist nudged me away from the rim of grief and back to reality.

The mighty metasequoia, a fossil tree dating to prehistoric times, can be found in various spots in North America, including Princeton and New Brunswick in New Jersey and on several estates on the North Shore of Long Island.

The foliage of Metasequoia glyptostroboides, also known as the dawn redwood tree, is soft and inchworm-green.

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Zigging and Zagging in the Information Age

This New Jersey based group is announcing its top 75 intra- and entrepreneurs and brand builders.

 

I suppose I should not bury the lede – there is some news – I have been recognized as one of the “top 25 Brand Builders” of 2017 by Leading Women Entrepreneurs, a New Jersey organization founded by start-up queen Linda Wellbrock. The story of the honorees is being reported by NJ BIZ and NJ Advance/Star-Ledger and will soon appear in New Jersey Monthly. Brand builder, you might ask? I will explain. But first let’s back up.

A friend told me the other day that she puts in extra effort to keep regular tabs on me because I am always in the midst of change. First, she says, I was a journalist (at The Star-Ledger of Newark, N.J.) Then, she noted, I worked in communications at Princeton University, first as a science writer and then as director of communications at Princeton’s Plasma Physics Laboratory (PPPL). Now, she said (her tone growing a bit exasperated) I’m an author and public speaker. And, and (she said “and” twice to make sure I heard as I am a noted daydreamer), I teach journalism and public relations at Rutgers University and, in the fall, will also be teaching at the legendary St. Benedict’s Prep High School in Newark. (60 Minutes piece: https://www.sbp.org/60Minutes )

Harumph, she said. What’s with all this change?

Funny. Where my good friend senses change, I respectfully disagree: I’d like to say I see continuum and growth. The information environment in which we all are swimming is in constant flux. I don’t want to live in a vacuum. I want to respond to my environment.

Like anyone else, a combination of hard work and luck gave me some career victories. In my case, they included getting a job at a daily newspaper straight out of college, earning my first front-page spot at a major daily for a police story that went from being routine to obscene, being assigned the science beat at the Ledger, landing a coveted job at Princeton, winning a management position at PPPL, getting a short story published, writing a novel, and learning from great colleagues so I could teach at Rutgers and St. B’s. Each one has led naturally to the next challenge. It’s all connected. That’s how I see it, anyway.

The best public speakers, according to one of the all-time experts, the late Dale Carnegie, are those who speak from a deep well of experience. They stand before their audience with the confidence of someone who has lived their subject, experiencing accomplishments and mistakes, proud moments and embarrassments, in times exciting and deadly dull. They have worked with geniuses, wits, pranksters, curmudgeons, martinets, lazy lumps, backstabbers, braggarts, sweethearts, gentle souls, cynics, and skeptics. Far from being a plain bolt of fabric, their worklives are tapestries, wildly and luxuriously emblazoned, sturdy to the touch.

I also enjoy talking about my mistakes, especially to my students because they look so surprised. Either they can’t believe I was that stupid or they can’t absorb the idea that I would own up to it. Indeed, there were the times I could have done much better, the times when I was blinded by knowledge rather than being set free by it, the time I believed in a journalistic subject so much I couldn’t see his deception, the times I was lax about my own safety, and the hours I wasted dreaming about winning prizes when, in the end, work is never about that.

I am, therefore, super honored about the award from the Leading Women Entrepreneurs because someone else nominated me without my knowledge and because it places me in a company of woman who I admire and who have achieved so much. I am being honored for my efforts as comms director at the U.S. Department of Energy’s Princeton Plasma Physics Laboratory  where both the DOE and the University allowed me the privilege of building a comms team of wizards to newly produce a dynamic website, a newsmagazine, multiple social media accounts, both internal and external e-newsmagazines, and multiple other offerings. The idea was to encourage the plasma physicists and engineers and other employees of the Lab to tell the incredible story of fusion energy and convey its importance to the public. And, I’m proud to say they did and that the effort has continued.

Instigated by my brilliant colleague, Robin Gaby Fisher, I have also introduced public relations to the journalism students at Rutgers University in Newark. Fisher, a Pulitzer Prize-winning journalist-author I worked with at the Star-Ledger, is now leading the journalism program at Rutgers-Newark. In addition to hiring me to teach various journalism classes, she has also urged me to introduce the program’s first PR courses.  My students are flying high with this knowledge and gaining great internships.

As for me, I plan to continue walking the journalistic and communications path that strikes me as exciting and consistent, at least to my eyes!

Kitta MacPherson

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Aldous Huxley, Where are You?

Scientific advances have made genome editing easier, spurring an explosion of interest around the globe. An expert committee has weighed in on next steps, ethical and otherwise.I knew this day was coming. I had to.

I knew this day was coming. I had to.

As a science journalist, I have covered many of the major milestones in modern molecular biology. And there have been some doozies. Standing in the East Room of the White House, where Teddy Roosevelt boxed and President Lincoln’s body once lay in state, I watched President Clinton in June 2000 as he stood with scientific rivals Francis Collins and Craig Venter and announced that humankind had deciphered the human genome. Cracking the code of our genetic blueprint, we knew, would lead to much more. Since that event, I have written of other milestones, including the dazzling possibilities of human embryonic stem cells and the strangeness of cloning.

On Tues., Feb. 14, an advisory panel convened by the prestigious National Academy of Sciences and the National Academy of Medicine issued a game-changing announcement: It would, with some caveats that allow for more research and discussion, support genome editing, more commonly known as germline engineering. This powerful new tool makes precise alterations to an organism’s genetic material. Everything I have written about molecular biology has pointed to this day. And yet, this is a moment I have dreaded because it will require so much of us as a society to get it right.

What’s the big deal, you might ask. Gene therapy, the alteration of the genetic material of somatic cells to treat disease or disability, has existed since the 1990s.  The big difference is this: Somatic cells used in gene therapy are non-reproductive, meaning any change made in the person’s genome would not be carried over to his or her descendants. On the other hand, the germline genome editing that is the subject of the report results in genetic changes being inherited by the next generation.

The report, “Human Genome Editing: Science, Ethics, and Governance,” wisely stated the challenges ahead:

(The technique) “raises concerns about safety and unintended effects. It has also been argued that this degree of control in human reproduction crosses an ethically inviolable line. These discussions move the conversation about genome editing beyond individual-level risks and benefits toward significantly more complex deliberations that touch on technical, social, and religious concerns about the appropriateness of this degree of intervention.”  

As a firm believer in science, I can see the advent of germline engineering as an opportunity of wonder, underscoring the power of research. Prospective parents who carry disease-causing mutations would be able to ensure that their genetically related offspring would be born without the burden of an inherited disease. And there are thousands of inherited genes that are caused by mutations in single genes, the committee noted.

As a career journalist who has taken to heart the role of bearing witness and safeguarding the public trust, I can smell danger. The technique not only raises concerns about harm to the subjects and genetic changes that are unforeseen. The science also makes possible the prospect of designer babies, that is, for those who will be able to afford them, as well as other eerie sci-fi scenarios.

Part of President Clinton’s June 2000 White House speech

But we shouldn’t lose our cool just yet. In the U.S., laboratory scientists are presently unable to consider conducting germline engineering research due to a Bush-era prohibition designed to limit stem cell research. Federal funds, which support most of the biomedical research conducted in this country, cannot be used for research in which a human embryo is intentionally created or modified to include an inherited genetic modification.

The concern by the committee, however, is that other countries, such as China, do not limit researchers with such prohibitions. All the more reason, the committee said, to establish a standard. While there is a need for caution, the committee recommends that germline editing research trials be permitted. Risk-benefit analyses will be necessary. And, such research could only be conducted for “compelling reasons and under strict oversight.”

One of the most important aspects to consider going forward, the committee said, is the crucial role of the public in the process of applying societal values to the risks and benefits of germline engineering. The committee concluded:

 “…broad participation and input by the public, along with ongoing reassessment of both health and societal benefits and risks, should be a condition for moving clinical trials forward.”    

We live in a country run by people who willingly ignore the solid, data-backed conclusion of most scientists that climate change is real. Entire science agencies have been gagged from speaking with the press and the public. This is a topic that calls for a national effort.

Can I be blamed for worrying about how we are going to thread this ethical needle?

— Kitta MacPherson

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How a tree and a scientist nudged me out of the morass

From the Koru Magazine blog, where I explain what drove me to write my newly published essay: "In Groves of Green, I describe what happened to me, almost from a sensory perspective, during a period a year or so after my husband’s death when simple events unstuck me and nudged me forward."

From the Koru Magazine blog, where I explain what drove me to write my newly published essay: “In Groves of Green, I describe what happened to me, almost from a sensory perspective, during a period a year or so after my husband’s death when simple events unstuck me and nudged me forward.”

I am honored to be included in the first-ever issue of a new online literary magazine, Koru, based in Australia. A Maori woman, Anjulie To Pohe, is using her people’s creation traditions to represent the endeavor of artists and writers everywhere. The image of the koru, she writes, is used throughout Maori symbology and is based on the shape of an unfurling silver fern frond. Its circular configuration conveys movement and constant change. Its inner coil is emblematic of creation.

A koru

A koru spiral is based on the shape of an unfurling silver fern frond

Koru’s first issue centers on “Beginnings,” and it includes my essay, “Groves of Green.” The piece describes in an almost sensory manner an era of my life when I was moving out of numbness and darkness to something bright and green and growing. Some ancient trees and a kind scientist were instrumental in pulling me gently back to living.

I hope you enjoy it, as well as the whole beautiful magazine!

Kitta MacPherson 

 

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Born with a gift: my brother, John Kirkpatrick MacPherson, was the first to discover a family trait.

Born with a gift: my brother, John Kirkpatrick MacPherson, was the first to discover a family trait.

 

“Memories are chemicals. Tiny tag teams of proteins and neurons. Electrically charged gobs of ectoplasm. Researchers at the University of California have watched memories, mere specks, hatched live in the brain cells of sea slugs…”

So begins my essay, “Son of Memory,” in the Fall Equinox issue of Mused Literary Magazine issued today about “eidetic” or photographic memory — a specific type of memory some neuroscientists believe to be genetically based.

My story is at once scientific and personal. It’s about a family member and the moment he — and the rest of us — discovered he possessed this trait. It’s taken me a long time to be able to write about it.

Our parents were intellectuals and raised us to be as such. We were never allowed, though,  to show off about any particular talents, mental or physical. If we had any gifts, our job was to stay beneath the radar and use them for good purposes “Never let them know how good you are until it’s too late,” could have been a family motto.

I understand now that writing about something doesn’t mean you are showing off but more that you are examining an event, the way you might study a fossil you find on the floor of a forest.

The concept of eidetic memory is still debated by neuroscientists. But, if you lived as I have, seen what I have seen, and knew what I know, you probably would be less disposed to  argument. I’m just sayin’…

Cheers!

Kitta MacPherson

 

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Novel excerpt published in Copperfield Review

The Copperfield Review, A Journal for Readers and Writers of Historical Fiction.

The Copperfield Review, A Journal for Readers and Writers of Historical Fiction.

I am beyond excited to say that an excerpt from my novel, “Mad Hatters and Glow Girls,” has been published in the Summer 2016 issue of The Copperfield Review.

The Copperfield Review was founded in 2000 by Executive Editor Meredith Allard as a way to create an online home for readers and writers of historical fiction. Since then, The Copperfield Review has been featured in Writer’s DigestNovel and Short Story Writer’s MarketKiller StartupsDuotrope, The Los Angeles Times, and Las Vegas Seven Magazine. It was named one of the top sites for new writers by Writer’s Digest and it has received the Books and Authors Award for Literary Excellence.

According to the journal’s website, “In every quarterly edition, The Copperfield Review publishes the very best from up and coming as well as established authors of historical fiction. The editors are proud that CR has been the first publication for many talented new writers from around the world. Each edition features new historical short stories, historical poems, and history-based nonfiction articles.”

The literary magazine’s new imprint, Copperfield Press, published its first anthology of historical fiction in November 2015.

— Kitta MacPherson

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