The Scourge of Alzheimer's Disease in Print and On the Screen

The other day I forced myself to go see the film "Still Alice." I had read and been terrified by the book when it first came out. Lesa Genova's novel about a brilliant college professor felled by early onset Alzheimer's disease was devastating to me but I wanted to see Julianne Moore's Oscar-winning performance. 

It happens that I've also been reading a gorgeously written family saga called "We Are Not Ourselves," a debut novel by a beautiful young man named Matthew Thomas. Reviews have been outstanding. Superlatives like "American classic" and "new novel of the American century," have been bandied about. But it wasn't until I visited his website today that I discovered how deeply personal this book was for him.

http://www.matthewthomasauthor.com/news/

http://time.com/author/matthew-thomas/

Set in an Irish-American enclave in Queens, Thomas follows several generations from the end of World War II, a time when the so-called American Dream was actually attainable for most immigrants, to current times when so many have found that the reality doesn't always live up to the hype.

Eileen Tumulty struggled as a kid, covering up for her mother's alcoholism while enabling her dad. The love and attention she lacked left an enormous chasm in Eileen and a yearning for a better life, education being the way up and out. And so it is that, when she meets and falls for the affable, sharp-minded college professor Ed Leary, she sees a secure future ensured.

And for many years, life is good. Ed dotes on their son Connell, born just when they had resigned themselves to a childless marriage. Eileen excels as a nursing supervisor, squirreling away every penny for the day when they can leave their duplex behind for the suburbs. But, what Thomas does so expertly, and what links this novel in my mind to "Still Alice," is slowly, inexorably open up the fissures in the family's foundation.

There's a sense of impending doom that settles on the reader early in the narrative and it doesn't let up. Which isn't to say, don't read this book. After all, most great literature goes to very dark places and it will lend itself perfectly to book discussion groups.

At 640 pages, this novel reflects an investment in time, and some critics have opined that further editing should have been done. I disagree. For a writer to truly tackle the subject of early onset Alzheimer's disease as it batters a family, day in and day out, emotionally, financially, and physically over the course of several years, takes time and patience.

"We Are Not Ourselves" is a deeply involving, extremely honest portrayal of a family that, like so many of us, just puts one foot in front of the other every day, usually doing the right thing, handling the obstacles that fate puts in the way as best they can, finding joy in small pleasures, and loving each other fiercely. Perhaps this is the true American dream.

Florence Gordon is this Decade's Olive Kitteridge

Brian Morton is not a household name among readers. What a shame. The man teaches at NYU and directs the writing program at Sarah Lawrence College. Based upon my reading of his latest novel, "Florence Gordon," he must be very talented at what he does. It can't be easy to write a difficult woman but Florence is perfect. She's a combination of my favorite crank from Louise Penny's Three Pines, the poet Ruth, and the very difficult and misunderstood Olive K.

 

 

When I get together with some of my more honest friends over a few glasses of wine, (you know who you are), I find that we will admit to each other that we don't really like people as much as we used to. Or, perhaps it's more that we no longer feel we have to suffer fools gladly. Life's just too short and we've been around long enough to speak the truth. And so it is that, if you trust me, you'll find that 75-year-old Florence, a feminist product of the fifties, spurred on by the Friedan/Steinem movement, is a woman you'll recognize as a kindred spirit and enjoy spending time with.

 

Florence Gordon, though renowned in women's studies programs, is also not a household name, until, that is, her memoir is reviewed on the front page of the "New York Time Book Review." Will celebrity change Florence her son and daughter-in-law ask? Suddenly a household name, she finds that she needs an assistant to help her schedule the book tour and the speaking engagements while guarding her much needed privacy. Is her seemingly aimless, college drop-out of a granddaughter, up to the task?

 

Morton deftly paints the difficult relationship but growing understanding between the curmudgeonly luddite Florence and her 21st century, tweeting, blogging, granddaughter Emily. Florence, much like myself, worries that the younger generation of women have no sense of the rights they stand to lose if they don't learn from the battles of those who have come before.

 

But Emily is more perspicacious than Florence gives her credit for and, in a great scene, Emily recognizes her grandmother's chutzpah as she storms into the center of a Manhattan street with a crowd of like-minded protesters.

 

There are many laugh out loud chapters in Morton's novel even though the themes are deeply serious. I happily watched Florence put rude people in their places, hanging up on her doctor's secretary who kept her on hold just a second too long, or counseling an overwhelmed young mother who moonlights as an author escort in order to flog a memoir written before she's even begun to live.

 

This is a novel about a fiercely independent woman, one who loves her family but finds that she has little in common with them. She is a woman who has made a satisfying, fulfilling life on her own terms. She is a woman who has used her intellect to write passionately about injustice over the span of a fifty year career without compromise. To some, an opinionated woman like Florence Gordon is a threat. To me, she is an icon.

Thoughts on War and Death in Redeployment

I've recently returned from the frozen tundra of mid-winter Ohio where the love of family and friends helped to keep me warm as we sat with my brother Alan during his final days. He was only sixty-three years old and I'll admit that I did plenty of interior raging at what I perceived as the outrageous unfairness of his devastating cancer diagnosis.

 Yet, simultaneously, I happened to be reading Phil Klay's National Book Award winning collection of short stories, "Redeployment," about the Iraq war and its aftermath. It helped to put my thoughts into perspective. My brother has a glorious legacy, a wife who will always love him, four wonderfully unique children, and six amazing grandchildren.

What if, I wondered, his life had veered down a very different path back in the late '60's, early '70's when the draft lottery was implemented. How well I remember the night my college buddies and I hung breathless in front of the TV watching our futures be determined by a rolling metal basket full of numbers. The Vietnam War was raging. Some would go halfway across the world to fight a battle they didn't even believe in based upon the fluke of a glass capsule in a cage. My brother was spared.

 



Not so fortunate are the boys Klay introduces us to. One could say that the difference is that these kids signed up. Full of the jingoistic passion that permeated the country after the Sept. 11th attacks of 2001, 18-year-olds were falling over themselves to join the Marines. Or were they? As Michael Moore pointed out so eloquently in his film, Fahrenheit 9/11, those who go to war today can often be lottery losers as well. Today's lottery is a matter of economics. Those with advantages stay home and get more advantages. Those without, go to war.

The strongest story in the collection is undoubtedly the first, the title story, "Redeployment." It's a heartbreaking rendering of a soldier returning to the states after a nine month tour in Iraq and the stream of consciousness thought process he goes through as he contemplates the reunion with his wife and their dog. The awkwardness as husband and wife try to avoid any serious conversation, plying each other with platitudes, is palpable. When he takes her to their bed he sees, just for a split second, fear in her eyes.

Phil Klay served in Iraq after graduating from college. He admits in interviews that he never actually was in a dangerous position. Yet he manages to capture the chaos of war and the bitter irony of the manner in which our government conducts war. Another story, "Money as a Weapons System," reads like "Catch-22," when a new foreign service officer is charged with rebuilding a water treatment facility (that we had destroyed, of course) with money earmarked for a women's health facility that was hugely successful.

And in "War Stories," a horrifically burned, deformed young man named Jenks meets with his best friend in a bar where they have a surreal conversation about how to get Jenks laid without having the woman pity him. Later, a girl joins them who is doing research for a veterans' film project. She asks pointed, seemingly heartless questions of Jenks about his injuries, how it happened and what he felt afterwards, yet Jenks handles these with aplomb. It is his friend, angry and defensive, who loses it.

I have read some provocative, excruciating, powerful novels about war. Karl Marlantes' "Matterhorn," will always stand out as the finest depiction of the Vietnam War for me. And though I don't think that Phil Klay's short stories have the cohesion I'd like to see in a series, I suspect that they will be remembered, along with other Iraq war classics like "Billy Lynn's Long Half-time Walk," or "The Yellow Birds," as a fine example of the deeply personal and profound literature coming from our veterans. We owe them a reading to bear witness to their bravery, confusion, and pain, and to accept partial responsibility for sending them off to war in the first place.

Being Mortal

 

http://atulgawande.com/

 

Dr. Atul Gawande is as renowned for his writing as he is for his practice of medicine, but oh, how fortunate we would be if we had a doctor such as he when faced with serious illness and decisions. The subtitle of his newest book, "Being Mortal," is "Medicine and What Matters in the End."

Many of my readers are aware that my family is in the throes of a relentless illness and the seemingly impossible decisions that come with debilitating disease. Family discussions often bring unresolved issues to the surface and honesty can suffer at the hands of nuance. Watching a loved one come to terms with his own mortality causes one to become hyper-vigilant about his own beliefs and wishes. My living will is undergoing another iteration as I type.

But Dr. Gawande, with his Oxford and Harvard training, still finds himself hard-pressed to follow his own best advice when the patient is his father, a man of enormous vitality, a surgeon and humanitarian, struck down by an invasive tumor. Facing the prospect of quadriplegia, Dr. Gawande's dad and his mom, (also a doctor), begin investigating options. Reading about their quest for the best possible outcome is an eye-opening look at the medical profession and at the various "types" of doctors that Gawande identifies.

There are the information givers, you know, just the facts ma'am. There are the paternalistic who think they are doing you a favor by keeping you in the dark. But every now and then you might be fortunate enough to meet the partner. The one who sees you as a unique human being with goals, and a history, and an understanding and acceptance of the limitations of the medical profession.

Gawande's special gift is that he writes in a simple, uncomplicated way. We immediately feel relaxed and respected in his company. When he recalls families he's worked with over the years, he does so with compassion even when he explores decisions he may have questioned. He makes no judgments except when it comes to his own fellow physicians who fail the empathy test, doctors who operate no matter the risks, who ply the latest and greatest chemo even when the expected outcome may be a devastating extra few weeks of life.

He writes of palliative and hospice care and the phenomenal work these professional givers of life do. He wonders why their services aren't offered more  and shares vital studies from around the country proving that patients who have more of a say in how they want to be treated during their final months and years are happier, more peaceful, and have greater satisfaction than those hooked up to IV drips, ventilators, and feeding tubes.

This book should be required reading for the greatest generation and their children. Judging by its place on the New York Times bestseller list, perhaps it is making its way through my baby boomer generation.  We need to understand our options as we age, be better prepared to make our desires known to our families, and then, most difficult of all, have the moral courage to stand by what we believe when our time comes.