Speaking From the Heart on the Importance of Medical Research

Personal Perspective: Fighting against potential cuts in medical research.

By Greg O’Brien

Writer and Alzheimer’s patient speaking recently at the “Stand Up for Science” rally at the Lincoln Memorial.
Source: Photo courtesy of Susan Quirk.

As someone living with Alzheimer’s and with cancer, I was honored to be asked to speak recently at the “Stand Up for Science” rally before thousands of people at the Lincoln Memorial. My focus was the need for more medical research for these demons of disease.

It was literally a godsend to be introduced by Dr. Francis Collins, who served as director of the National Institutes of Health under three presidents. Dr. Collins, a biomedical researcher renowned for leading the Human Genome Project in the 1990s, was also a keynote speaker at this rally to protest the Trump administration’s drastic cuts to the federal work force and to federally funded science.

In his speech about taxpayer-funded medical research and science, Dr. Collins quoted from Lincoln’s Gettysburg address: “of the people, by the people, and for the people.”

Dr. Collins is a blessing. He knew I was nervous about speaking—out of sorts in my disease—and he instinctively calmed me, as did Susan Quirk, who works at Washington-based UsAgainstAlzheimer’s, where I serve on the board.

I was anxious, yet in the zone—focused on the place of the heart, which I deploy daily in my journey.

As I spoke, I quoted from Ernest Hemingway’s brilliant work, A Farewell to Arms, where he wrote: “The world breaks everyone, and afterwards some are strong at the broken places.”

I implored all at the rally to be strong in the broken places!

I believe that innocent lives will be lost as a result of drastic cuts on the table for critical medical research for Alzheimer’s, cancer, and other horrific diseases.

Few would argue against the need to cut government waste. I certainly don’t. But the need to cut waste must be thoughtful — not a meat cleaver approach that is in process now.

For the record, I’m a career journalist, and politically in the middle. I have no party affiliation. I am advocating (for as long as I can) for what I believe are the right things.

My comments were not about shoveling ashes on the White House. My focus is building a strong constituency for bipartisan support for medical research and care for the millions upon millions of those suffering today.

I am deeply concerned about the future.

It’s simple math. I learned at a young age from the Sisters of Charity in an Irish Catholic school outside Manhattan that one plus one is two.

But if you subtract two, you now have zero.

And that’s not right! Yet, I fear that’s where we’re headed.

It just shouldn’t be that way…

Good research and science are not dirty words!

I lost my maternal grandfather, my mother, and my paternal uncle to Alzheimer’s, and before my father’s death, he too died of dementia. One of ten kids, I was at both my parents’ death beds on Cape Cod as family caregiver. My children and grandchildren may be predisposed to Alzheimer’s, cancer, or both. It’s in our family genes.

The image burns inside me.

The thought of cutting back on research into Alzheimer’s, cancer, and other diseases is an abomination to me.

Today, like others on the Alzheimer’s journey, I am dealing with an ongoing breakdown of my mind/body, given that brain signals are not connecting properly. I also deal with serious internal hemorrhaging at times, incontinence, and a degree of numbness from my neck to my feet, following spine reconstruction years ago at New England Baptist Hospital in Boston—a ten-hour operation.

At times, I feel a bit like Gumby.

I told the rally crowd that I didn’t want their pity. I‘m far more focused on research for Alzheimer’s, which can be a 20-year journey, the experts say. It’s like having a sliver of your brain shaved every day.

That’s why we need more research to slay the demons of disease such as cancer and Alzheimer’s!

Today, I have little short-term memory and often a series of blanks. Thus, my MacBook Pro laptop is my best friend. I write everything down before it vanishes.

As with others on this serpentine journey, I deal with disconnections every day—with hallucinations, deep depression, all-out confusion, a loss of self and place. It’s not pleasant.

Again, that’s s why we need more research into ways to detect, treat, and even prevent these diseases, not less.

And so I keep moving forward, as I can, in faith, hope and humor—not retreating. I write and speak at rallies like this one on behalf of UsAgainstAlzheimer’s and also the Cure Alzheimer’s Fund of Boston with world Alzheimer’s experts and researchers like Rudy Tanzi of Harvard and Mass General Brigham to encourage others. Years ago I served on the Chicago national Alzheimer’s Association Younger/Early Onset Alzheimer’s board with Paul Hornback, a former US Marine pilot, government engineer and a man of great faith. Suffering from Alzheimer’s, Paul wrote a book titled: “God Still Remembers Me—Devotions for Facing Alzheimer’s Disease with Faith.” Hornback’s book inspired me. The Lord indeed does remember! As a wholly imperfect person, I see my relationship with God as a combination of the agonizing Lurch in the Adams Family, and Telly Savalas, the lollypop Kokack: “Who loves ya, Baby.”

So I press on. The point to all this is that without a strong commitment to adequate funding for medical research, we lose our soul as a nation.

In my closing remarks to the rally crowd, I turned to the iconic film Animal House, to the late John Belushi, aka “Bluto” Blutarsky, in his epic speech rallying defeated fraternity brothers facing school expulsion:

“Over? Did you say ‘over’?” Bluto goads them. “Nothing is over until we decide it is!”

And so it’s not over, folks!…. Keep rallying. Keep the faith. Be strong at the broken places!

This is not a liberal or conservative cause. It’s a fight-for-life issue.

(Greg O’Brien is a career journalist, writer, and author. He lost his maternal grandfather, mother, and paternal uncle to Alzheimer’s, and before his father’s death, his dad was diagnosed with dementia.)