Standing As One in Support of Alzheimer's

10/30/2017 05:26 pm ET
We few, we happy few, we band of brothers.—St. Crispin’s Day Speech, William Shakespeare, King Henry V, Act 5, Scene 3.
(Band of Brothers, Sterling Farms Golf Course, Stamford, CT., standing as one. Greg O’Brien is second from right.)
O'Brien photo
(Band of Brothers, Sterling Farms Golf Course, Stamford, CT., standing as one. Greg O’Brien is second from right.)

Standing on the rambling Fairfield University campus in the late 1960s, high above Connecticut’s Gold Coast, with pastoral meadows rolling gently to the sea, one had the impression of an Andrew Wyeth painting, a poetic landscape, rather than a college campus. The idealism of the moment oozed.

A Jesuit education in the liberal tradition, ranked among the best in New England, Fairfield University fostered logic, loyalty, respect, perseverance, and communication as an art form—traits my band of brothers still carry with them today, an Irish lot with names like Kelly, Keefe, Keenan, Kerwin, Kitson, McGrath, and many others, not to mention those of us with apostrophes. As a freshman, I landed on the first floor of the sandstone, no-frills Gonzaga dorm with all the Gaelic “Ks,” given the Jesuit logic of alphabetical order and the fact that I roomed with my high school buddy Brian Keefe. I didn’t realize at the time the influence the letter “K” would have on my life. The eleventh letter of the alphabet, “K” represents the “voiceless velar plosive,” linguists note. Not sure what the hell that means, but in summary, a consonantal sound used in many languages.

My buddies were anything but voiceless. And that’s a good thing. Like many Baby Boomers of the day, we first played by the rules, broke the rules, then made new rules. We had a helluva lot of fun along the way. We bonded and pushed boundaries, yet not splintering them altogether, like the time we broke into the Jesuit rectory on campus and scarfed their beer, wine and scotch, then sprayed the linoleum hallway of our dorm with a fire hose so we could play some reckless bare ass slip-and-slide, or the time when we lassoed one of our good buddies naked to a chair on parents weekend, and sent him down in the elevator to the lobby where parents had assembled, shaving cream obfuscating the private areas.

Ok, so we had a little drinking problem at the time.

Then came the Vietnam draft.

Collectively, we did a lot of growing up in 1969, the height of the Vietnam War, the year of the first military conscription since 1942. On December, 1, 1969, 365 birth dates, individually and randomly assembled in small, blue plastic capsules, were pulled out of a shoebox, one-by-one in a lottery that determined who was going to war, who was staying home, and who in the moment would be saved. It was a night that dramatically changed lives. Those with low numbers were to be drafted at an appointed time, those with high numbers lived to fight another day. And if you were flunking out of school with a low number, you were gone, baby, gone! That simple, that direct.

So what else would a band of brothers do on the night of such a consequential lottery? We threw a dorm party, a ragger—wine, beer, some chips, and, yes, veggies for the faint of heart. It was an all-boys school at the time, so no one crossed a line that night. We all showed up early for the event, like a football tailgate. The Irish, before throwing dice, can be exceedingly optimistic, giddy almost, but the Irish, as many know, can be pragmatically fatalistic when the roll comes up short.

It came up short for some of my brothers that night with Richard Nixon in the White House. The party quickly transitioned to a wake, as the Vietnam War became the longest in U.S. history, and older men in government were sending younger men to die, just to save face over what many of us felt was a misbegotten war.

On cue, the lottery preempted the iconic “Mayberry RFD” on CBS television with a live black-and-white feed with correspondent Roger Mudd, reporting from the Selective Service Headquarters in D.C. It was a low-budget affair with a curious cornucopia of furniture fashioned together on a makeshift stage, at odds with the crucial significance of the moment. Speaking in quiet, measured tones, as if he were announcing a PGA golf tournament, Mudd, with millions watching, explained the lottery drawing would be far less baroque than the one in 1940, when on the brink of World War II, Secretary of War Harry Stimson, before drawing numbers, was blindfolded with a swatch of upholstery that had been clipped from one of chairs used in the signing of the Declaration of Independence.

Moments before the first number was pulled in ’69, we all toasted one another, in St. Crispin’s style, and took a ceremonial swig of beer. Then the shit hit the fan. The first number pulled was September 14, the birth date of my friend Steve Ivers, who was seated next to me. Silently, Ivers stood up, walked out of the room, and didn’t mutter a word, yet started a procession that had all the ambience of a funeral dirge. That night in spirit we all vowed to stick together forever, and through all the serpentine twists of life, through all the dangers, the hazards, and threatening disease.

And so, fast forward, it was no surprise to me a few weeks ago when the band of brothers assembled at Sterling Farms Golf Course in Stamford, Connecticut, for a tournament to stand in support of another assault, the fight against Alzheimer’s—mine. Alzheimer’s took my maternal grandfather, my mother, paternal uncle, and before my father’s death, he, too, was diagnosed with dementia. Now Alzheimer’s has come for me, the Vietnam of the 21st century, poised to decimate the Baby Boom Generation. Our numbers again are being called.

As we stood at the first hole, a close Fairfield friend, Tommy Kerwin, boldly stepped forward—not to grab his Big Bertha, but to take a courageous swipe at Alzheimer’s. Tommy announced that he, too, had just been diagnosed with Alzheimer’s after a battery of tests and scans at Johns Hopkins Hospital in Baltimore. You could hear a tee drop, but no one walked off the course, as we had in the dorm room that night in 1969. We stood as one, knowing that Alzheimer’s will deeply impact the lives and families of all of us, and far more to come. Alzheimer’s is a lottery of sorts. While relentlessly impacting women, African Americans, and Hispanics, the disease respects no demographic, no gender, no race, religion, personal preference, or political party. If there ever were a bipartisan issue to stand on today, it is for a cure for Alzheimer’s, to drive a knife through this demon. We are all at risk.

“We all need to embrace the fight, to know we’re not alone,” Kerwin told his brothers.

Born in Brooklyn and raised in Valley Stream, Long Island, Tom Kerwin is the epitome of an Irish American—tough, street smart, single-minded, imperfect to the core, yet resolute in his grit for excellence. Tom and I share much in common. We were both altar boys, good students, played sports in school, were wholly mischievous at the time, and thought we were shielded from evil.

Little did we know.

In the last year, Tom began experiencing the early symptoms of Alzheimer’s. The indicators worsened: increased short-term memory loss, confusion with time and place, poor judgment, withdrawal, general numbness of the mind, blurry eyes, along with other horrific symptoms. Tom suffered silently at first; couldn’t function well. Like most of us on this journey, he walked in denial, until his dedicated wife Dianne, whom he had met at Fairfield University, began to notice disturbing concerns, then his children, Allison, 34, Brendan 32, and Chelsie, 30, did also.

Retired now, Tom is living in Chadds Ford Township in Pennsylvania, a self-described semi-rural community about 25 miles west of Philadelphia, along the banks of Brandywine Creek. It is far afield, more a state of mind, than geographically, from Kerwin’s earlier tenure with impressive financial positions with Citibank, Chase Manhattan, Smith Barney, and finally as Senior Vice president of J.P. Morgan Chase. Tom, like me, studied literature at Fairfield; he’s a genius in his own way, a right brain/left brain guy. Hard to find these days.

At his wife’s urging, Tom sought a battery of clinical tests and brain scans that resulted in a Johns Hopkins Hospital diagnosis of Early Onset Alzheimer’s, and disbursement of medications in hopes of slowing the progression. “Alea iacta est,” as Tom and I both learned in high school Latin—“the die is cast…”

“I knew something was terribly wrong,” Tom tells me, expressing that the end-stage stereotype of Alzheimer’s does not speak, in any way, to the horrific early and mid-stage symptoms of the disease when one is far more aware of the fate that awaits. “Yet many, I’ve learned, are afraid to speak out given the stigma of the disease. To some extent, it was a relief, for me, to identify the enemy that I now have to fight in this worldwide epidemic. We, as a family, were overwhelmed by the diagnosis, surprised and fearful, yet committed to the assault that awaits us. My family has big arms! When I told with my children of the diagnosis, the general consensus was: Dad, that explains a lot.”

After the disclosure, as with my own children, there were hugs, kisses, tears, then the loaded question: What next?

“I’m going to be tested,” says Tom. “But I know I’m not alone in this fight. It’s a high wire act, but there’s a net of support beneath me. And now I have to walk with new eyes.”

And he’s right. I tell Tom about the recent counsel on life from a good friend from California, Ken Dychtwald, a noted gerontologist, psychologist, author, and a founding member of the Alzheimer’s XPRIZE team that recently won a global competition at the 2017 XPRIZE Visioneers Summit in Southern California—the world’s top crowdsourcing and technology prize that harnesses the power to solve imposing challenges worldwide. I was honored, I tell Tom, to have been a part of the Alzheimer’s team of top scientists and advocates, competing against China, Singapore, Chile and others in the fields of Alzheimer’s, Clean Air, Re-imagining Democracy, Zero Waste Mining, and Cybersecurity.

As Dychtwald retells the story, related to us after the award, he met many years ago in Denmark with distinguished physician and gerontologist, Dr. Esther Mueller, 87 years old at the time. After an hour of genial conversation, Dr. Mueller looked at Dychtwald and asked bluntly, “How will you live your life?”

Perplexed by the question, Dychtwald inquired, “Do you mean what I will do for my livelihood?”

“No,” Dr. Mueller replied. “How will you live your life…how will you use your life?”

Accomplishments and achievements aside, Dr. Mueller told Dychtwald that during her nearly nine decades of life then, she had come to fathom that beyond the practical considerations and successes most of us pursue, each of us has the ability to "use" our own life as an instrument for either good or bad, contribution or diminishment.

“I believe that a life should not only be well-lived, but well-used,” she told Dychtwald.

The counsel has stuck with me, and now with Tom Kerwin. In Tom’s “testing,” he is fully committed. His life moving forward, I believe, will be “well-used.”

Kerwin’s Fairfield roommate for three years, Buz Keenan, a media consultant from New Jersey, who lost his father to Alzheimer’s, is assured of that. “In those formative years, when I needed good direction, I turned to Tom. I never saw this end coming for him. We will stand as one.”

Observes Bob Kelly from Asheville, North Carolina, who works in the health field, who helped Keenan organize the golf outing, and who suspects Alzheimer’s also is in his family tree: “Tom’s newly disclosed diagnosis hit all of us like a ton of cinderblocks, reinforcing that we’re all vulnerable to Alzheimer’s, along with our children and grandchildren. We need to find the code, and turn this damn thing off!”

Fairfield alumnus Bill Rogers, a Chicago attorney and a rabid Cubs fan, knows the frontline well. His younger sister has Down Syndrome, and two years ago, she was diagnosed with early dementia—a sad, yet natural progression for many with this genetic disorder. Says Rogers, “I am unsure if my sister still recognizes me. It is hoped that research on Down Syndrome individuals with early dementia will assist in learning how to combat the disease with the general population. I am hopeful for that.”

Late to the golf outing for medical reasons, understandably, was Dr. Terry Sacchi, a close Fairfield friend and a top cardiologist at New York Presbyterian, Brooklyn Methodist Hospital. Dr. Sacchi, clearly more cerebral than the rest of us, has been a sounding board for encouragement in this journey. He later emailed me a quote from Julius Caesar about the fight in life: "Cowards die many times before their deaths. The valiant never taste of death but once."

And so it was no surprise when my Fairfield buddy Greg McGrath responded to others about concerns for threatening rain that day in Stanford. “It’s not about the golf,” he said. “It’s about standing as one…”

And we do, a band of brothers, alongside a band of sisters, and a band worldwide. Arms tightly locked.

Amen.

Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and was an Eric Hoffer International Book Award finalist, as well as a finalist for USA Best Book Awards. An expanded On Pluto edition, New Horizons, will be released in November. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” has run a series about O’Brien’s journey, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary, Can Alzheimer’s Be Stopped, among other regional and national interviews. O’Brien has served on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, is a patient advocate for the Cure Alzheimer’s Fund of Boston, and a board member of the distinguished Washington, DC based UsAgainstAlzheimer’s. He is now working with world renowned pediatrician Dr. T. Berry Brazelton on a book about aging and the Last Touchpoint, the journey from the cradle to the grave.

This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.
CONVERSATIONS