The Genome Odyssey: Medical Mysteries and the Incredible Quest to Solve Them by Euan Angus Ashley

 

I have been interested in genome research since I first heard about it. As a genealogy researcher, I am curious about what we inherit from our ancestors. I seek out family resemblances and inherited traits, finding my eyes in one relative, my body type in another. 

I wonder what health issues I inherited, or did not inherit. My mother had autoimmune diseases, and so do I. My grandfather had horrible ragweed allergies, and so does our son. My father had non-Hodgkin's lymphoma, and so does my cousin. My aunt and her two children struggled with alcoholism. Two grandfathers (aged 52 and 68) and an uncle (age 34) died of heart attacks. 

For some people, their genes are secret time bombs. A healthy athlete suffers a sudden heart attack and dies. A baby's normal progress stops, and even regresses. 

What if there was a test that could warn us of impending or likely health issues so doctors could be prepared to remedy or even cure them? What if it was affordable for everyone? What if if was part of our normal preventative health care insurance?

This could be reality.

The Genome Odyssey is a fascinating narrative of Dr. Ashley's research in genome sequencing and how it was applied to solve medical mysteries. 

The science is very accessible in presentation, so that even non-medical folk like myself can understand how genes and sequencing works. The personal stories of those whose lives were changed through genome sequencing  and genetic therapy are affecting. For some, simple OTC supplements changed their life.

The author addresses the current Sars-CoV-2 pandemic, telling how the scientific community swung into action even as governments floundered, and explaining how vaccines was developed and how the different kinds work on the virus. 

"Could even more widespread use of genomics have gotten us further ahead of this pandemic to begin with?", he asks. He notes that wastewater can predict which community will have the next rise in infections. If we systematically tested wastewater the way we test drinking water, we could be prepared to prevent disease flareups.

In a capitalist, profit-driven health system, the question is who will pay. Will the rich only benefit, or those victims of rare diseases who are covered by research grants? Another issue to be addressed is the privacy of genome information and its use. Ashley adds, "Just because we can, doesn't mean we should. Nor does it mean that we can afford it."

Yet the possibilities of what doctors will be able to do in the future are endless.

I received an ARC from the publisher through Bookish First. My review is fair and unbiased.

The Genome Odyssey: Medical Mysteries and the Incredible Quest to Solve Them 
by Euan Angus Ashley, MD, PhD
Celadon Books
Publication Date: February 23, 2021

hardcover $26.99; ebook $14.99
ISBN 9781250234995

from the publisher

“This wonderful page-turner captures the excitement, peril, wonder and anticipation of the so-called “genomics” era — the era that has begun us to allow us to sequence the entirety of DNA carried within our bodies, and to understand the functions of parts of this genome. Dr Ashley, one of the pioneers of gene sequencing technologies, writes with authority, elegance and simplicity to enable an in-depth understanding of the most exciting scientific developments of our times. Every curious reader must read this book.” —Siddhartha Mukherjee, Pulitzer Prize-winning and #1 New York Times bestselling author of The Emperor of Maladies and The Gene

In The Genome Odyssey, Dr. Euan Ashley, Stanford professor of medicine and genetics, brings the breakthroughs of precision medicine to vivid life through the real diagnostic journeys of his patients and the tireless efforts of his fellow doctors and scientists as they hunt to prevent, predict, and beat disease.

Since the Human Genome Project was completed in 2003, the price of genome sequencing has dropped at a staggering rate. It’s as if the price of a Ferrari went from $350,000 to a mere forty cents. Through breakthroughs made by Dr. Ashley’s team at Stanford and other dedicated groups around the world, analyzing the human genome has decreased from a heroic multibillion dollar effort to a single clinical test costing less than $1,000.

For the first time we have within our grasp the ability to predict our genetic future, to diagnose and prevent disease before it begins, and to decode what it really means to be human.

In The Genome Odyssey, Dr. Ashley details the medicine behind genome sequencing with clarity and accessibility. More than that, with passion for his subject and compassion for his patients, he introduces readers to the dynamic group of researchers and doctor detectives who hunt for answers, and to the pioneering patients who open up their lives to the medical community during their search for diagnoses and cures.

He describes how he led the team that was the first to analyze and interpret a complete human genome, how they broke genome speed records to diagnose and treat a newborn baby girl whose heart stopped five times on the first day of her life, and how they found a boy with tumors growing inside his heart and traced the cause to a missing piece of his genome.

These patients inspire Dr. Ashley and his team as they work to expand the boundaries of our medical capabilities and to envision a future where genome sequencing is available for all, where medicine can be tailored to treat specific diseases and to decode pathogens like viruses at the genomic level, and where our medical system as we know it has been completely revolutionized.

Brooklyn On My Mind: Black Visual Artists from the WPA to the Present by Myrah Brown Green

Brooklyn On My Mind: Black Visual Artists From the WPA to the Present by Myrah Brown Green brings together 139 inspirational artists with connections to Brooklyn. The book is beautifully presented, each artist given a two-page spread to showcase their work, and accompanied with a brief artist's statement or biography sketch. It is a book full of powerful images depicting the black experience. 

Ellsworth Ausby (1942-2011) Space Odyssey and an untitled work

Turning pages is like a visit to a gallery, each work an exciting encounter.

Kehinde Wiley portraits

There are well known names such as Kehinde Wiley who was commissioned for the portraits of President Barack Obama and First Lady Michelle Obama. 

Chapter Title Page, Games, 1979, by Jacob Lawrence 

Jacob Lawrence is one of the WPA artists included. I was lucky to have seen an exhibit of his Legend of John Brown paintings at the Flint Institute of Arts in 2016.

Dread Scott writes that he creates "revolutionary art to propel history forward."

I was drawn to the beautiful portraits of children.

Ernest Crichlow (1914-2005) Her Stand, 1987

Ernest Crichlow was part of the Harlem Renaissance and a mural painter and art teacher for the WPA.  Her Stand is a beautiful portrait, but he said that his early controversial work, such as a painting of a Klansman raping a  black woman, "best represented him."

Violet Hewitt Chandler, Boy in Cap and Sweater (2015)

Violet Hewitt Chandler used her children in many of her portraits. 

Fishing, 2012, by Carlton Murrell

Carlton Murrell wrote that his art captures his nostalgia of childhood in the Caribbean which he hopes will spur peace, calm and optimism. 

James Brown's Sorrows, 1992, strikes the viewer with its emotional impact, the strong lighting and shadows. The woman hiding her face is especially haunting.

Sorrows, 1992, by James Brown

I loved the use of fabrics  and found objects in Study War No More, 2015, by Deborah Singletary.

detail Study War No More, 2015, by Deborah Singletary

The gold shimmer in Myra Kooy's Light Streams, 2017, is just extraordinary. She writes that she desires to "offer the viewer, through my art, an equally peaceful place upon which they can relax their eyes."

detail Light Streams, 2017, by Myra Kooy

The book is divided into seven thematic chapters:

• The WPA Experience, President Franklin Roosevelt's Works Progress Administration which gave jobs to artists and writers during the Depression
• Passing it Forward, the standard-making artists
• Songs of Our Mothers and Fathers, artists representing the African American heritage
• In the Spirit, artists whose work channels the spiritual
• Global Inspirations, art that represents places beyond Brooklyn
• Contemporaneous Connections features art that incorporates 21st c issues and technology and ideas
• New Thought, the artists who "keep the create arts flame burning in Brooklyn."

I hope this glimpse into the book intrigues you! Every page is enthralling.

I received a free book from the publisher in exchange for a fair and unbiased review.

Brooklyn On My Mind: Black Visual Artists from the WPA to the Present
Myrah Brown Green , Foreword by Chirlane McCray
Schiffer Publications
hard cover $60.00
Size: 9″ x 12″ | 395 color images | 288 pp
ISBN 13: 9780764356520 

about the author

Dr. Myrah Brown Green is an art historian, author, arts consultant, lecturer, and independent curator. Raised in Cambridge, Massachusetts, her love for arts began in childhood while spending countless hours creating at the Community Art Center in the housing complex where she lived and included frequent excursions to culturally rich art institutions. She moved to Brooklyn to attend Pratt Institute. Dr. Myrah is also a professional quilt maker who has been quilting and teaching textile arts for more than thirty years. Her quilts are in a number of prestigious collections including the Smithsonian’s Anacostia Museum in Washington, DC, and Michigan State University. For the past decade Dr. Myrah has devoted her time to assisting the Black New York artist community to document and archive their art.

from the publisher 

This new resource assembles 129 Black artists and their magnificent works, highlighting their important contributions to art worldwide. Beginning with the Brooklyn-based artists active during the Works Progress Administration years and continuing with artists approaching their prime today, the collection spans 80 years of art. From highly publicized artists to rising talent, each is tied to Brooklyn in their own way. Artists include Jacob Lawrence, Otto Neals, Onnie Millar, Kehinde Wiley, Dindga McCannon, Melvin Edwards, Dread Scott, Xenobia Bailey, Vivian Schuyler Key, Kay Brown, Russell Frederick, and many more. Seven chapters highlight overarching themes that connect the artists, besides their Brooklyn connections. A foreword by New York City’s “first lady,” Chirlane McCray, marks the importance of Brooklyn’s Black creators within the city’s art community.

The Great Indoors: The Surprising Science of How Buildings Shape Our Behavior, Health, and Happiness by Emily Anthes

 

I so enjoyed reading The Great Indoors. Every chapter was enlightening and interesting, the science made accessible and relevant. Emily Anthes wisely introduces readers to cutting-edge insights and ideas through a series of first person experiences of applied science.

I have been isolating in place since March 11, 2020. With very few trips into the world other than neighborhood walks; my life has been spent indoors. Our son, like millions of people, has worked from home. School closings meant our neighbor's children were educated from home. 

Anthes begins her journey at home, the "indoor jungle" of microbial and insect species that we share our space with. Of course, many of these originate in our own bodies! Our personal bacteria, and those of our pets (who introduce outdoor microbes) create a personal, unique biome that we recreate wherever we take domicile.

Next, Anthes stops at the hospital. Those bacteria we share in our home get shared in the hospital rooms, persisting even after cleaning. Sure, we have come a long way; what more can be done? Anyone who has been overnight in a hospital knows the issues: sounds and lights that prevent sleep and raise stress; the awful views of roofs or walls from the windows. Studies prove that patients recuperate quicker and better when they have private rooms with a view.

Buildings themselves lead to the health issues that send us to hospital care in the first place. Giving people ways to exercise, encouraging the use of walking and stairs can help. Starting in elementary schools. Anthes visited a school built to encourage movement and good eating choices.

Finding the balance between privacy and communal interaction is a continuing workplace challenge. Cubicles are being replaced by unassigned workstations. I remember wearing a sweater in summertime air conditioning, and short sleeves in overheated winter offices. What is the best option--working in a crowded room or isolated in a private office?

The chapter on building to accommodate all people, including the disabled and handicapped, has broadened to include people on the Autism Spectrum Disorder. Since every Autistic person has different needs, no one plant fits every need. We meet people seeking a space that allows independent living.

The history of prisons is a dark one, for even the 'improvements' were harsh. Quakers believed in reformation through isolation that allowed contemplation and repentance. The Philadelphia penitentiary  built to enforce this isolation morphed into today's solitary confinement, which has proved to exacerbate mental health issues. Anthes visits a prison that feel home-like, with direct supervision and interaction between staff and inmates, have proven successful. Of course, the real solution to mass incarceration is investing in communities and addressing the root causes of crime.

Smart devices are all the rage. Some of us already are living a Jetsons life with high-tech homes. Robot vacuums and programmable appliances are fast becoming old technology. There are mirrors that can detect cardiovascular issues based on skin color. Senior residential floors that alert staff to falls. The implications are both comforting and disconcerting!

Soon after we moved into our retirement home, our community suffered a rare flood that destroyed thousands of home basements. It took years for most to haul out the damage and make repairs, with local contractors overwhelmed with work. We were lucky; situated on a hill, and having addressed basement cracks, we stayed dry. But for millions, flooding and rising water levels is a continual threat. It is amazing to read about floating homes and how houses can be retrofitted on a budget.

Last year I read about a woman's experience of live on Mars....Well, at least life in a biodome that recreated what it would be like to live in community on Mars. Scientists are studying what kind of buildings would be needed to live on the moon or on another planet. Even IKEA has been involved.

Every part of your life is addressed in The Great Indoors. Home, health, learning, independence, and the future. 

I received a free book from the publisher through Goodreads.

The Great Indoors: The Surprising Science of How Buildings Shape Our Behavior, Health, and Happiness
by Emily Anthes
Scientific American / Farrar, Straus and Giroux
Published June 23, 2020
ISBN0374166633 (ISBN13: 9780374166632)

from the publisher

Modern humans are an indoor species. We spend 90 percent of our time inside, shuttling between homes and offices, schools and stores, restaurants and gyms. And yet, in many ways, the indoor world remains unexplored territory. For all the time we spend inside buildings, we rarely stop to consider: How do these spaces affect our mental and physical well-being? Our thoughts, feelings, and behaviors? Our productivity, performance, and relationships?

In this wide-ranging, character-driven book, science journalist Emily Anthes takes us on an adventure into the buildings in which we spend our days, exploring the profound, and sometimes unexpected, ways that they shape our lives. Drawing on cutting-edge research, she probes the pain-killing power of a well-placed window and examines how the right office layout can expand our social networks. She investigates how room temperature regulates our cognitive performance, how the microbes hiding in our homes influence our immune systems, and how cafeteria design affects what—and how much—we eat.

Along the way, Anthes takes readers into an operating room designed to minimize medical errors, a school designed to boost students’ physical fitness, and a prison designed to support inmates’ psychological needs. And she previews the homes of the future, from the high-tech houses that could monitor our health to the 3D-printed structures that might allow us to live on the Moon.

The Great Indoors provides a fresh perspective on our most familiar surroundings and a new understanding of the power of architecture and design. It's an argument for thoughtful interventions into the built environment and a story about how to build a better world—one room at a time.

Lost Son by M. Allen Cunningham

In my late 20s I was browsing in a downtown Philadelphia book store and happened upon a slender volume, Letters to a Young Poet. It changed my life. A few years later, I took the Duino Elegies on vacation to Maine, and sitting on pink granite cliffs overlooking the Atlantic ocean, I opened it and read the words, "If I cried out/who would hear me up there among the angelic orders?" It gave me chills.

Forty years later, I still read Rainer Maria Rilke and still struggle with understanding the words that thrill me. 

When I heard of a novel about Rilke I ordered a copy and it languished on my TBR shelf until I found myself the recipient of an egalley of previously uncollected Rilke poetry. I had to revisit Rilke to understand where the poetry came from. I hoped that M. Allen Cunningham's novel could be help.

Lost Son  follows Rilke's life from 1875 to 1915, incorporating the poet's letters into his text. 

Rilke's parents had lost a daughter; his mother turned her son into that lost daughter, naming him Rene Maria and putting him in dresses until his father took a stand. Rene was sent to military school, where he endured much suffering. 

His family had determined his sex, his education, his career, all unsuitable to his disposition and sensitive soul. He knew he was to be a poet.

At the center of his story is Lou, an older, intellectual, beautiful woman who eventually becomes his lover. Although married, she had remained a virgin. She listened to him, counseled him, consoled him, traveled abroad with him.

And then, held him at a distance. She studied with Freud, remained with her husband. Rilke met a young artist Clara. A pregnancy brought them to marry. Clara had studied with the master sculptor Rodin, and she encouraged her husband to write a monograph about Rodin.

Rilke took Rodin as his mentor, taking to heart the advice Rodin did not even follow: that work must displace everything else for the artist. Solitude was necessary for the artist to work.

And so he befriended women, felt eros, and fled.

Rilke struggled with his art in isolation, separated from his family, wandering from place to place, finding succor and temporary lodging, writing endless letters to Lou and Clara and everyone else he met along the way, pouring out his anguish and thoughts and communing from afar.

Rilke was out of France when the Germans took over; in effect, he was exiled from his home, his apartment, his possessions, his everything in this world.

"Even your papers are gone. Your manuscripts Your hundreds upon hundreds of letters and copies of letters...Uncle Jaroslav's old Rilke family crest. The small silver-framed photograph of your young Papa..." Cunningham writes, the chapter concluding with Rilke's letter to Princess Marie that ends,"Once again, my heart has fallen out."

Perhaps this is not a novel for 'everyone,' as Rilke's writing is not for 'everyone'. But for those who love the poet, it does feel right, a slant of light illuminating a difficult life. Cunningham immersed himself in Rilke's writings, especially those letters, and recreates Rilke's life in poetic prose. 

Covid-19 Life: Snow Days

I love this photo of the grandpup Sunny. She discovered the seat gave her a nice view of her domain. 

We are still waiting to be notified for a COVID vaccination. Meanwhile, winter came and left us a whole lot of snow. We are lucky; unlike some parts of the country, we did not lose heat or power or water. The stories are heart breaking.

We have a battery snowblower, which could be problematic if we lost electricity! It is light and easy to use, but not really up to tackling a heavy snowfall. 

The early robin hangs around the yard for the heated water bowl. I don't know why they return in the middle of winter!

I get the winter doldrums, which is amplified by the pandemic's necessary social isolation. The bitter cold temperatures keep me indoors, and this winter we can't go to the fitness center or mall to walk and exercise. When the temperature rises to 28 degrees, I bundle up and take a walk.

 Consequently, I am watching more television. Thank God for PBS! Right now we are enjoying Miss Scarlet and the Duke. And of course, the reboot of All Creatures Great and Small. We loved The Good Place which we watched earlier this winter, an now are watching Mr. Mayor which also stars Ted Danson with Holly Hunter. I am winding up The Good Wife, into season seven. And we are revisiting Chuck and The Gilmore Girls.

That's a lot of tv for me, and I don't even have a quilting project prepared as an excuse. Today I have to buckle down and layer the Water Lilies quilt for hand quilting.

A quilt friend gifted me a preprinted panel to make an apron. The pattern is called the Nancy, so she knew I had to have it. I am sewing it up.

My Goodreads win  Infinite Country by Patricia Engel arrived in record time!

Our library book club had a marvelous Zoom with Angie Kim to discuss her novel Miracle Creek. We were scheduled to read it and Skype with Angie a year ago. Then came the lock down and the library had to adjust and turn to Zoom meetings. Angie was a gracious, lovely person. We learned how the book was based on her own experiences and heard about her upcoming book, which we are eager to read.

My brother spent the long weekend at his cabin. The roads were bad, the snow storm caused a white out, and he discovered the propane had been left on and the tank was nearly empty! He returned home to discover the local deer had taken over the yard in his absence.

I did the taxes yesterday. And ordered more tea from Simpson & Vail, and a delivery from the drug store, and chose food for our weekly order from Imperfect Produce. 

I had a reprieve from cooking for two days; we order the $50 family special from a marvelous modern Italian restaurant in town and the food lasts us three meals. We have pizza and salad the fist night, and the pasta, salad, rolls, and green beans/broccoli the second night. And for lunch we have left over pizza and more salad. And, it comes with deserts! I had tiramisu and hubby the almond cake. The owner said in a news story that these deals have kept them open over the shut down. They do have the best, homemade pizza ever, everything is from scratch and amazing.

And so, life goes on.

My husband bakes bread and enjoys computer gaming and reading.

I keep busy with reading, quilting, writing, and reading social media and the many email newsletters I received. The quilters Zoom every week, and the book club every month. I order online for grocery and other deliveries. And like everyone else, miss family hugs and yes, I am even beginning to miss going to a store. 

Spring will come. And it will be so freeing to be able to sit outside and watch nature return to life, and take walks around the neighborhood. We can social distant visit outdoors. And, if we ever get that vaccination, we will don our double masks and venture into a store, perhaps to the bakery whose coffee cake we miss so much, or to the take-out place that sells the best pasties in Michigan.

The longer days bring hope of spring and rebirth and growth and healing.

Stay safe. Find your bliss. 

The Mission House by Carys Davies

"What was it, exactly, that he liked so much? Was it because it had an aura of home, or because it felt completely strange and new?"~from The Mission House by Carys Davies

I enjoyed Carys Davies last novel West so immediately requested his new novel The Mission House. 

Hillary Byrd was no longer comfortable in a changed England and sought escape by traveling to India. He was still miserable until he learned about the beautiful climate of the hills. He rents the house of a missionary on leave and discovers the village has all the comforts he requires, the legacy of the British army. For the first time in years he was content.

His host, a padre, has taken in a young woman, Priscilla, and asks Byrd to help polish her education to fit her for marriage. While teaching her English and sewing and baking, Byrd is drawn to her. The padre despairs for her future after he is gone and seeks a husband. Byrd is jealous.

Priscilla may be deformed and dependent, but she has dreams and is determined to make her own future.

Byrd can't escape the tribalism running rampant in the world, people "wanting to be surrounded only by people who were the same as they were," seeking an imaginary ideal past. He left it behind in England only to fatally discover it alive in India.

Byrd is condescending toward the natives; even his love for Priscilla is a parable of colonialism. Byrd uses his dedicated native driver thoughtlessly, spilling out his thoughts and grievances on their daily jaunts, but he never sees the man as a person. The ending is both ironic and tragic, Byrd's last action misguided but noble.

The novel wields a big impact in 272 pages. The writing is quiet and introspective, but there is a powerful story here.

I received a free galley from the publisher through NetGalley. My review is fair and unbiased.

The Mission House
by Carys Davies
Scribner
Pub Date: February 16, 2021
ISBN: 9781982144838
hardcover $24.00 (USD)

from the publisher:

From the multiple award-winning author of West and The Redemption of Galen Pike, a captivating and propulsive novel following an Englishman seeking refuge in a remote hill town in India who finds himself caught in the crossfire of local tensions and violence.

Fleeing his demons and the dark undercurrents of contemporary life in the UK, Hilary Byrd takes refuge in a former British hill station in South India. Charmed by the foreignness of his new surroundings and by the familiarity of everything the British have left behind, he finds solace in life’s simple pleasures, travelling by rickshaw around the small town with his driver Jamshed and staying in a mission house beside the local presbytery where the Padre and his adoptive daughter Priscilla have taken Hilary under their wing.

The Padre is concerned for Priscilla’s future, and as Hilary’s friendship with the young woman grows, he begins to wonder whether his purpose lies in this new relationship. But religious tensions are brewing and the mission house may not be the safe haven it seems.

The Mission House boldly and imaginatively explores post-colonial ideas in a world fractured between faith and non-belief, young and old, imperial past and nationalistic present. Tenderly subversive and meticulously crafted, it is a deeply human story of the wonders and terrors of connection in a modern world.

Covid-19 Life: New Books On the Shelf, Happy Valentines Day

 

My brother gave me a book store gift card for Christmas and I finally decided to use it. I bought Hamnet by Maggie O'Farrell and The Address Book: What Street Addresses Revel About Identity, Race, Wealth and Power by Deidre Mask, both of which I failed to obtain as galleys or ARCs.

Not that I have nothing to read!

New on my NetGalley shelf are:

• The Reason for the Darkness: Edgar Allen Poe and the Forging of American Science by John Tresch
• Republic of Detours : How the New Deal Paid Broke Writers to Rediscover America by Scott Borchert
• The Ride of Her Life: The True Story of a Woman, Her Horse, and Their Last Chance Journey Across America by Elizabeth Letts. I have read and reviewed her last novel Finding Dorothy and her previous book The Eighty-Dollar Champion
• Light Perpetual a novel by Frances Spufford whose previous novel On Golden Hill I reviewed and whose nonfiction book I May Be Some Time: Ice and the English Imagination is one of my all-time favorite books.

From Goodreads I won

• Infinite Country, a novel by Patricia Engel, set in Columbia

From Bookish First is coming

• Finding Freedom by Erin French, a memoir

I am currently reading (still) A Promised Land by Barack Obama, The Arsonist's City by Hayla Alyan, and Meditations by Marcus Aurelius. I also need to do a quick read over of Miracle Creek by Angie Kim for book club on February 17--Angie is going to Zoom with us, too!

I finished a quilt that has been hanging around because I was not thrilled with it, it just wasn't what I had imagined it would be. It started with the fantastic fabric of dandelions which reminded me of Ray Bradbury's Dandelion Wine. I embroidered a favorite line from the book and sewed on shiny sequins representing fire flies coming from the mason jar.

Sunny and Ellie send Valentine kisses to all. Stay safe. Find your bliss.