On Pluto (28 page)

“Malcolm,” Janie said, “There's your dory. You sail it out of the river, into Pleasant Bay and out into the Atlantic; you sail that dory home.”

When she turned back to her father, he was gone. Malcolm had sailed to the horizon and home.

As Barry and I look up from his deck, a single white dory is sailing gracefully across the bay. We are astounded. Barry then tells me a story about his late father, a minister, and how he relates now to his father in death as a magnificent blue heron. Within minutes, the white dory crosses the bay in front of his deck, and a resplendent blue heron sweeps across the shoreline.

Silently, we sit in awe, as we look out across the bay.

****

A week later, there is a knock at my office door. Standing in the threshold is a man in his early 40s, dressed in an old-school flowing black cassock with a Roman collar, as white as the ridge board on my house. There is a peace, almost an angelic glow, to him. He looks like Father Chuck O'Malley in
Going My Way
, played by a young Bing Crosby. I'm thinking the Lord has called me home.
Extremaunción
to go! But the man has no oils or candles.

I look closer. He looks elusively familiar, but I still can't get my bearings. He calls out my name and introduces himself. It is James Smith, a former reporter I trained 20 years ago at
The Cape Codder
and
The Register
, one of the oldest continually published weeklies in America. James is now studying to be a Catholic priest in Nebraska. Two decades ago, we were part of a Bible study after work in the newsroom; some shunned us for it.

James tells me that he has read a newspaper story about my
illness and felt compelled to visit; he also tells me that his father is dying of Alzheimer's. He has come for a purpose; clearly he has something to say. We talk about the notion of detachment, an end-life divesting of material, and intellectual possessions. Disentanglement, he counsels, results in purity of spirit. This seminarian is a student of scholar Albertus Magnus, St. Albert the Great, as he is known in parochial circles. Magnus was born in the 13
^th
century; the German friar is considered among the world's greatest intellects. He was the mentor of the brilliant Thomas Aquinas and taught Aquinas that memory is the coin of temporal life. Dante, in his
Divine Comedy
, places Magnus and his pupil Aquinas in the class of the greatest lovers of wisdom.

Albertus, James tells me, practiced poverty of the mind when he learned late in life that he would lose his memory. There were no tests for Alzheimer's then. James reads to me from his iPad. It is an excerpt from Albertus' teachings, compiled by the late theologian Réginald Marie Garrigou-Lagrange, considered the 20
^th
century's greatest student of Albertus and Aquinas. The excerpt is a bit dense for me, but meant to take hold. “The goods of the intellect are our knowledge, our talents … We must learn to ignore curiosity, vain glory, useless natural eagerness … placing ourselves at the service of God, detaching ourselves from our own lights.”

James reads on from Lagrange: “Our memory inclines to see things horizontally on the line of time that flees, of which the present alone is real, between the past that is gone, and the future that is not yet … But the chief defect of our memory is what scripture calls the proneness to forget God. Our memory, which is made to recall to us what is most important, often forgets the one thing necessary, which is above time and does not pass.”

I come to realize that it's fitting to forget myself, while embracing the light from wisdom, putting on what the Philipians call the Mind of Christ. God's mind doesn't atrophy, though mine will some day, but only in body.

James leaves, and I sit alone again in silence, surrounded by memories of photos, news clips, and memorabilia from the last seven decades. But memory isn't everything, just the glue of one's life.

****

My Elmer's bottle is empty, and so in Alzheimer's, I reach daily for the paper clips of the mind, a reserve of mental fasteners to hold the dots of a thought together as the brain functions like a laptop frozen in a software pinch, displaying a disturbing rainbow-colored icon that spins at high speeds, declaring the computer is not engaged. Everything is shut down.

My brain, on this day, is not responding. The rainbow icon is spinning again. Back in my office, the imagery of my memory, I look for reinforcement in a picture of my mother on the wall; the picture of my grandfather is behind me. I think about what's to come. Dismissively, I start writing the “B-roll” of my obit in a staccato style, mimicking apocryphal obits that newspaper buddies and I used to draft over a few beers after a deadline, a style that William Randolph Hearst would relish: “Dead. That's what Greg O'Brien is today.”

But today is not the day. I am caught again in the mirror of infinity—seeing the past, confused in the present, and preparing to head to Pluto, Sedna, and beyond for the final staging, at peace with revelations of the present, the security of not having to hold onto the past.

The wind has shifted again. The rusted iron cod on the weathervane at the gable end of my barn is pointing to the southwest, yet another warning of foul weather fast approaching from the nor'east. I sit alone in a high-back Elizabethan chair, the same seat occupied at my parents' dinner table on Sunday nights in Eastham. I am deep into solitary, probing thought. Inside the mind of Alzheimer's isn't such a bad place to be on this cloudy fall day. There's a clarity to it, as I await the sunrise of a
new morning, secure that the sun will set at dusk, hoping to see it rise yet again, knowing one day it will not, as I drift further out into the Milky Way looking for my mother.

Epilogue:

R
EADY,
S
ET,
A
CTION

By David Shenk

Y
ou can't go back now. You can't un-know Greg O'Brien's fearlessness, or his family's heartache. Alzheimer's has too young a face now, and a warm, lovely cottage on Cape Cod. It has a gentle wife and three loving kids who aren't nearly ready to say goodbye to their dad. It has a story that won't ever leave you, or me … unless we get Alzheimer's.

This is just a simple truth.

So what now? What are you going to do with this knowledge? For this Epilogue, my friend Greg asked me to address what specific action the reader can or should take. You've already opened up your heart and let Greg in—that's the most important thing. But what else can you do?

We have to stop Alzheimer's. We have to. That's why Greg wrote this book, and allowed filmmakers into his home, and why
he travels around the country giving speeches, and occasionally embarrasses himself on the radio, and gets lost, and sometimes feels like an idiot. He does it because he wants us to move into action and stop this goddamned disease. Now!

We can do it. A reasonable argument could be made that Alzheimer's still exists today only because we haven't yet stepped up to fight it hard enough. Smart researchers have been at it for decades, but we've only given them a fraction of the money they need to do the job.

This is a disease that has been afflicting the elderly throughout history. Ralph Waldo Emerson had it. Jonathan Swift had it. The Greek legislator Solon wrote about it in 500 B.C. But only in recent decades, due to dramatic gains in human longevity, has Alzheimer's emerged as a true social health catastrophe. People are living longer than ever before, thanks to modern nutrition and medicine, and are thus paradoxically exposed to increasing risks of Alzheimer's.

Currently afflicting 5.5 million Americans at an annual cost of more than $200 billion, these numbers will virtually triple by 2050. The global picture is quite similar: already, 34 million people worldwide have Alzheimer's or a related dementia. If left unchecked, Alzheimer's could bankrupt health systems everywhere. You've heard it before. This is no exaggeration.

More to the point, unless you plan on dying young, there is a strong chance
you
will get it. Or your spouse. Or your best friend.

There's no shame in selfishness. We should all feel compelled to stop this disease for the most selfish of reasons.

Researchers have made great recent strides, but we are not moving fast enough. Federal research funding stands at roughly $550 million—a paltry amount considering the scope of the problem and what the U.S. government spends on other challenges of this magnitude. This is augmented by smaller, but significant private efforts. After years of getting to know the Alzheimer's research community, I have recently come to support
the Cure Alzheimer's Fund (CAF), an exemplary consortium of top Alzheimer's scientists led by renowned geneticist Rudolph Tanzi, PhD of Massachusetts General Hospital and Harvard University, and connected to researchers at the Icahn School of Medicine at Mount Sinai in New York City, Washington University, University of Chicago, University of Pennsylvania, University of Southern California, Stony Brook, Stanford University, The Rockefeller University, The Johns Hopkins University School of Medicine, and many other great institutions. CAF's current annual research budget, all from private citizens like you and me, is approximately $10 million. They've already scored several important breakthroughs in genetics, diagnosis, and drug discovery. Greg and I know them well (and I assist them in educating the public). We trust them.

Here's what we should do soon, you and I. Of course, I'd like to introduce you to Greg in person. He's even more real and inspiring, and funnier. I'd also love for you to meet Dr. Tanzi. Another extraordinary person. The four of us could have a nice glass of wine and revel in life's richness and sadness.

But in the meantime, please consider playing a direct role in the fight to halt this urgent epidemic. Call your congressional representatives and let them know Alzheimer's is a priority for you and your family; that they are letting Americans down if they aren't fighting hard for more research. Also, donate a little something, or half your net worth, to the Cure Alzheimer's Fund (
curealz.org
)—or to any Alzheimer's research foundation you admire.

If you like to help the caregiving world, consider a donation to, or volunteering some time at, the Alzheimer's Association (
alz.org
). They do incredible work in every state in the U.S.

Don't do this for Greg. Do it for yourself!

(David Shenk is author of
The Forgetting,
creator of the
Living with Alzheimer's
film project, and a senior advisor to the Cure Alzheimer's Fund.)

Resources

A
lzheimer's is an insidious disease that slowly unravels the mind and the self. It shakes families to the core, and forces them to adapt in smart and meaningful ways.

While scientists work feverishly to stop Alzheimer's, there is much to be done for families right now. With funding from MetLife Foundation and in partnership with Cure Alzheimer's Fund, executive producer David Shenk recrucited four world-class filmmakers to produce short films, true life stories, about how individuals and families cope. Greg O'Brien and his family were the subject of a short film produced by renowned documentary producer Steve James. The film is titled,
A Place Called Pluto
, and can be viewed online at:
livingwithalz.org
.

Other Living With Alzheimer's filmmakers include: Oscar-winning producer Roger Ross Williams; Oscar-winning director Megan Mylan; and Emmy-winning Naomi Boak.

(This resource guide is courtesy of David Shenk and Living With Alzheimer's project.)

Learning About Alzheimers

Disease Overview

  
•
  
A Quick Look At Alzheimer's Disease: Five ‘Pocket' Films to Increase Understanding of a 21st Century Epidemic
http://aboutalz.org

  
•
  
NIH —What is Alzheimer's Disease?
http://nihseniorhealth.gov/alzheimersdisease/toc.html

  
•
  
The Forgetting
, by David Shenk
http://www.amazon.com/The-Forgetting-Alzheimers-Portrait-Epidemic/dp/0385498381

  
•
  
Alzheimer's Association — What is Alzheimer's?
http://www.alz.org/AboutAD/WhatIsAD.asp

  
•
  
Understanding Alzheimer's: A guide for families, friends, and health care providers
http://depts.washington.edu/adrcweb/UnderstandingAD.shtml

Statistics and Data

  
•
  
Alzheimer's Disease, National Center for Health Statistics
http://www.cdc.gov/nchs/fastats/alzheimr.htm

  
•
  
Statistics About Alzheimer's Disease, Alzheimer's Association
http://www.alz.org/AboutAD/statistics.asp

  
•
  
The Silver Book, Alliance for Aging Research
http://www.silverbook.org

Clinical Trials

  
•
  
ADEAR Clinical Trials Database, National Institute on Aging
http://www.nia.nih.gov/Alzheimers/ResearchInformation/ClinicalTrials/