“Night to Believe” event at the Sheraton Back Bay
(My acceptance address for the Hero Award presented by the International OCD Foundation)
On September 6 Denise Egan Stack, President of the IOCDF Board of Directors, called me to announce the Board’s decision to confer upon me this award. I was stunned. “So let me get this straight—the “Hero Award” for ‘Walking with Nathaniel’ this spring?” Denise could tell I was struggling with the word “hero” and its many connotations. Images of the Odyssey and Aeneas, Greek demigods, Roman conquerors, Arthurian Knights of the Round Table, King Charlemagne and his nephew Roland came to mind. To myself I thought, “Denise, no disrespect intended, but I think the Board might have made a big mistake!” However, the inner voice of my mom always emerges in these kinds of situations. She gently counseled me, “Be gracious! Be polite.” I was then and I am also now.
However, I do confess the word “hero” still troubles me deeply. It conjures up feats of courage, endurance, fortitude, perseverance, inner strength, resolve, and grace. The more I considered it, the more my son Nathaniel’s candidacy came to mind instead. He certainly personified all these wonderful virtues during his short life with its impossible struggles. You also come to mind, you who live with cruel brain disorders that you don’t deserve. Your tortuous thoughts are invisible to others, but are so painfully real to you as they were to Nathaniel. And then follow in line the parents, siblings, spouses, family members, caregivers, close friends—all of you who live daily in the arena of these illnesses.
For Judy my wife, Carrie my daughter, Nathaniel’s closes friends Dan, Carl, Justin, and Nate, me and many others, the journey of our witness of the ravages of Nathaniel’s OCD/BDD was truly unrelenting. If Nathaniel took his life, it wasn’t because he hadn’t fought many battles and wars against the demons that possessed him. To the contrary, and we saw it all firsthand. But we also saw his incredible heroism.
When you lose someone you love to a brain disorder, how do you ever recover? Well, you don’t—at least not completely. Life simply changes. The pain is so deep; the loss so profound; the void so empty. It is in this state of grief that the “Walking with Nathaniel” project was born. What could I do to make the life and death of one precious person, my son, more meaningful? What would Nathaniel want me, his dad, to do?
Friends, I don’t necessarily have answers that work for you to these questions. But for me, the calling was at first quite clear—to move forward physically, psychologically, and spiritually on an invented path that I called the “Camino de Nathaniel,” a modern pilgrimage route from my home in Cheyney, PA to Boston, MA, the home of the International OCD Foundation. All I really had to do was to put one foot in front of the other and to connect the geographical dots of Nathaniel’s life experiences. In the words of Jeff Bell, I needed to transform “adversity into advocacy.” So for me, the question was never why do this? The question was rather how could I not do this?
So here’s the Walking with Nathaniel project in a nutshell—552 miles walked; 1,110,000 steps; 62 fellow walkers joined me at various time and places; 25 friends and family provided me meals and/or shelter; I met with 145 professionals in clinics and hospitals; I talked with over 250 people on back roads and city streets; and 267 people signed my pilgrim’s passport.
All along the way, I was grateful for all the professionals who offered their expertise during his illness. I never once wagged my finger in anger or resentment for shortcomings in treatments or interventions that didn’t work. I forgave them and myself for what we didn’t do or couldn’t do during his life. I brought some closure to all these sad chapters by releasing them lovingly to the universe.
So advocacy for me is about the power of stories when you tell them. I told Nathaniel’s story over and over again as I walked this spring, hoping each time deeper listening would happen, truer understanding would emerge, and conversations about brain disorders would begin. And they did. In other words, what can the precious life of a single person teach us about being better people by who we are and by what we do? The enormity of Nathaniel’s pain and suffering has got to matter.
So I now say, “Hello, My name is Denis and I’m an OCD/BDD Advocacy-aholic.” I can’t stop telling Nathaniel’s story. So few people out there know what BDD is. During my walk, I had promised myself to talk to at least five people a day about Nathaniel, and I did—to the Dunkin Donut cashier, the postal worker, the family in the local restaurant, the policeman, the construction worker, the waitress, the hotel clerk, and my evening hosts—to at least five persons per day. You do the math—5 persons X 45 days equals 225 people.
It’s time for us to get brain disorders like OCD/BDD out of the closet. Let’s recognize the absolute integrity in the mental anguish of all sufferers. Let’s be sure everyone knows that you don’t choose to have and live these diseases. Unfortunately, they just happen.
So here we are tonight in Boston at the “Evening to Believe” event. Believe? Honestly, when Nathaniel died, I lost faith. Previous beliefs about the justice and fairness of life flew out the windows of my soul. As a matter of fact, in the first four weeks of my spring walk, I literally traversed the Ocean of Darkness and the Sea of Doubt. “What am I doing here? Whom am I kidding? What difference does this pilgrimage make as I walk like a homeless person along the side of the road.” And then the answer actually appeared on the front lawn sign of a home in Westerly, CT. It simply said, “Believe!”
So this faithless pilgrim had to affirm what he does in fact now believe.
- I believe that “walking the talk” can be healing.
- I believe that adversity to advocacy is a path of hope.
- I believe that the power of stories can bring public awareness and dispel ignorance.
- I believe that education can help reduce the stigma of OCD/BDD
- I believe that Nathaniel’s story has impacted lives and continues to do so; often in ways I can’t see.
- I believe that I can play some part in this new awareness.
- I believe that new brain research and therapies will eventually lick these disorders. So, thank you, doctors, psychiatrists, pharmacists, researchers, clinicians, therapists, social workers, sufferers, families, caregivers, and supporters for your hard work in these arenas.
It is in this vein that I now “Dare to Believe” with you and accept this award.