“Are you still walking?” friends often ask me. I answer, “Is there a cure for OCD and related disorders yet?” 7,400,000 steps later (over 3,700 miles), I continue to walk to tell Nathaniel’s story. One pilgrimage has morphed into another, and the miles have had an impact. Our son’s journey, as well as ours, continues, testimony to the power of words and stories as well as the unanticipated magic of the butterfly effect.

One of Nathaniel’s favorite childhood novels was The Hobbit. I first read it to him when he was quite young, and I could see the tenacious grip of the plot in his dark brown eyes begging me to keep on reading. We understood Bilbo Baggins’s hesitancy to leave the Shire since the comfort of home and the predictability of daily life can lure anyone to complacency. But we also knew that a big adventure waited him with his first act of bravery—stepping out the door—and once the journey begins, there is no stopping it.

I invite you to step out of your comfort zone and tell your stories too. It will make a big difference, not only in your own lives, but also in the lives of sufferers and the families and friends who live with these disorders. For me, a phone call from a family in distress who lost a son to BDD in March, an email from a woman about her daily challenges with this disorder, the courageous testimony of Eric in Sacramento at the 1,000,000 Steps walk, and six-year-old Cameron’s struggles with OCD let me know that we have yet to reach our goal.

This spring I have been re-reading the daily blogs of my walks in 2012 and 2013, and I vividly remember each day—Lynn at the breakfast diner in Philipsburg, Pat at the clinic, Milton at Kids’ Peace, Janet’s $10 contribution in Hatfield, Eric, the restaurant manager, who paid my meal at Carrabba’s, Mary Ellen at the Dunkin Donuts in Connecticut, and the warm welcome of residents at OCD Institute at McLean—all of them encounters at the heart-level that have been imprinted in every cell of my body. I told Nathaniel’s story over and over again and my listeners shared their own stories of cruel brain disorders suffered by family members, friends, or even themselves. What stories do you carry inside you? Who is your Nathaniel? What are you witnessing in your own life that needs to be shared?

Stories can heal us, but first, we have to have the courage to tell them. And when we do, we learn that we do not stand alone. Together, we create a community of hope and support that will draw more attention to the need for funding, research, and better treatment. Research is yielding answers, and more financial contributions can bring us to the tipping point. But first, we’ve got to step out the front door.

Please join us in Boston to walk on Saturday, June 7^th or walk in your own communities as a public witness to these disorders. Virtual walks count too, if getting out is too difficult. But remaining isolated and alone in the Shire won’t do. Buen Camino!

Why Erik’s Walking in Sacramento on May 10th

Last year, Erik Duarte was inspired by the story of our son Nathaniel’s struggle with BDD in a blog the IOCDF posted on its website. He too has struggled with BDD. This year, he will be attending the 1 Million Steps 4 OCD Walk in Sacramento on May 10^th and will tell his story about overcoming BDD. I invited Erik to share his story on the “Walking with Nathaniel” website as this year’s first blog.

I was diagnosed with Body Dysmorphic Disorder (BDD) in August 2009 at the age of 18. I am not certain when the symptoms first began but I do remember when I was 13 asking my niece for at least several minutes non-stop if my ears were big. When I was in elementary school we were assigned a partner and we had to draw a picture of each other. When my partner was drawing my face, he mentioned that I had a large forehead. I didn’t notice that before but, after that comment, I spent a great deal of time looking in the mirror, examining my forehead, which I now knew was large, from every angle.

By the time I was a senior in high school, BDD had taken over my life, although I had no idea what was happening to me. I spent endless hours looking in the mirror trying to find just the right angle so my ears would look “normal.” When I wasn’t checking my appearance in the mirror I was researching otoplasty (ear-pinning, a type of cosmetic surgery). This behavior progressed to the point I would not leave the house and wore a beanie 24/7 to cover my ears, even in 110-degree heat. I removed it only to shower and inspect my ears. I was eventually diagnosed with anxiety and depression, and began treatment that never addressed the core issue, BDD.   

After many months of ineffective treatment (I went through three therapists and two psychiatrists) and very little improvement, I began treatment at the Anxiety Treatment Center in Sacramento with Dr. Robin Zasio and Tracy Roulet. The treatment included Cognitive Behavioral Therapy and Exposure and Response Prevention. It was the most difficult thing I ever had to do—but I began to finally see progress—and the pay-off was huge. I was given the name of a psychiatrist who treats OCD and after many months, and several tweaks to my medication, we found what works for me. 

Almost five years later, I have completed a Veterinary Assistant course, became certified as a No Child Left Behind Paraprofessional so I can work with Special Education students, and am enrolled full-time in college working towards a degree in Health and Fitness. Just a few years ago I did not think any of this would ever be possible. But, with a correct diagnosis and proper treatment, I am proof that it is possible to live a happy and productive life.

Last year, I learned about the 1 Million Steps 4 OCD Walk in Boston and read about Nathaniel Asselin, who battled BDD for many years. It is Nathaniel’s story that is the inspiration for the Walk. I remembered all too well those days when I felt I could not go on. I have created a team and we all will be “Walking With Nathaniel” in honor of his memory and to support the Asselin family in their efforts to bring awareness to and help raise funds for BDD programs and research. I am very excited to have the 1 Million Steps 4 OCD Walk on the West Coast this year.   

My mantra during treatment was “Don’t Give Up, Don’t Ever Give up” and that is the message I want to share with everyone who attends the Walk in Sacramento.

It’s already two days after the walk (Monday, June 10) and I feel as if I am still in dreamland. Everything happened so fast. My Camino mind had difficulty adjusting to the new pace. However, the Friday night Terramia Restaurant Italian feast in Boston’s North End brought Judy, Carrie, and me together and fortified us amply for the Saturday Walk at Jamaica Pond. Let’s see if I remember some of the details.

Justin, Conor, and Gary

We get up early after my collapse from the night before after blogging past midnight. (Can anyone call 1 to 6 AM an adequate night’s sleep?) We rendezvous with Justin and step lively to be sure to arrive on time. During the subway ride to Jamaica Pond, I try to compose in my head my 10-minute speech before the walk starts, but activities on the T distract me, and I can’t compose even one logical sentence. Since I’m last on the program, maybe everything important will have already been said and I can just summarize.

Jennifer and Judy

When we arrive at Jamaica Pond along with about 200 others, including many family members and friends, we can see that the Foundation staff has the walk logistics well organized for ceremonies to begin at 9:30. Still no speech in my head, because every time I turn around, someone stops me to talks. Oh well. I’ll just have to wing it. Dr. Jeff Szymanski, Executive Director of IOCDF, opens the program, followed by Dr. Sabine Wilheim, Director of the OCD and Related Disorder Program at MGH, and then Dr. Katharine Phillips from the Rhode Island Hospital BDD Program. By the time it’s my turn, the crowd has learned a good deal about OCD and Related Disorders, especially about Nathaniel’s nemesis, BDD. Good. These professionals know brain disorders inside out and share candidly about their devastating impact on families.

That’s me speaking, just above the banner

Several minutes before I am to speak, the wind picks up, letting us know that the tropical storm is over and that the walk will be spared. Perfect. Prior predictions had not been so favorable. Oh, no, it’s my turn. I handle the mike uncomfortably, unable to juggle it and my few notes (three sentences on three separate pages). I’m not sure I remember what I said, but it was from the heart and I trusted that the words would flow. 10:00 arrives and it’s time to start walking.

Carrie, her roommate, friends from work, and cousin gear up for the walk

Tremendous energy is generated when many folks gather for a single purpose. As we walk, I use the opportunity to visit and talk with other participants. Signs on the side of the path give poignant descriptions of the various disorders, and a group of us stop in front of the BDD sign. I’m thrilled that at least for this moment in this corner of Boston there is a written proclamation of the disorder that tortured Nathaniel for so many years. We’ve made some progress.

As we process the day’s events later that evening, Judy and I affirm how being together with friends, families, and suffers of OCD and BDD builds a critical sense of community, and breaks the isolation that these disorders cause. One BDD sufferer confided to us at the walk that hearing Katherine Phillips and Sabine Wilhelm talk about BDD removed the personal stigma of the disorder. How huge is that? Sufferers of cancer don’t have to add personal shame or guilt to the trauma of dealing with the disease, but sufferers of brain disorders often do. Collectively, we can and will eradicate that stigma.

Thank you, friends, for following this blog, for contributing many miles and dollars, and for supporting us in this important work.

The Foundation just posted the total to date: nearly $65,000 raised. What a stunning accomplishment!

A moment of rest on Boston Commons the day after the walk. Mission accomplished.

Robert Hordan, my host on Capitol Hill, and I rise early and do the hearty breakfast thing. He thinks I’m melting away and wants to beef me up. I think I have lost a few pounds–might explain the pants slipping down easily as I walk these days. My dad would have suggested a 2″ nail to fix the problem. No thanks!

I say goodbye to Robert, my last host on the Camino de Nathaniel South. Endings are always a bit sad. Maybe that is why it’s raining today. To finish strong, I do a few more visits on the Senate side–Senators Al Franken (MN), Elizabeth Warren (MA), and Kelly Ayotte (NH). It’s easy for me to compare and contrast the cordiality factor in each office after each stop. Perhaps a professional development workshop on hospitality would do the trick. The welcoming factor varies.

I leave the Senate buildings and head for Union Station. It’s pouring outside and I get thoroughly soaked. I find that walking briskly around the train station achieves two ends–dries me out and adds additional steps to my walk goal. At last count, I have exceeded my original estimate of 380 miles from April 8 to June 8. Put me now down for 455 miles which translates into 910,000 steps.

I lunch with a friend whom I have never met before. Our common bond is that we are both dads and we have both lost sons. That experience alone brings the conversation to a deeper level rather quickly. We talk for an hour and a half, sharing our and ours families’ journeys of grief. I am grateful for the invitation and the gift of a good meal in one of my favorite train stations. Thank you, Steve.

Turning the GPS off for the last time, I hop on to the metro to National Airport where the complexities of modern travel kick in. The metro ticket machine doesn’t like my money and refuses to sell me a ticket. I argue as much as one can with a machine. Not very effective.

The first hurdle resolved, more move in to take its place to challenge my patience. Walking has its limitations, but nothing is as irritating as the ones I face trying to take a flight to Boston for tomorrow’s walk. Inventory of obstacles: Where is my driver’s license? I had it the other day. Why can’t my walking stick travel with me? I’m a pilgrim. Does it count as two pieces of luggage requiring me to pay the additional cost? Checking with Home Land Security about this walking “weapon,” I travel up and down the corridors of National airport increasing my mileage as I go. Today’s total grows to a whopping 13.50 miles.

And then there’s the flight delay. Had I known I had another hour, I would have squeezed in a couple more congressional visits. It looks as if it may be another hour before we depart. David Levinger, Westtown, crosses my path and we talk. We had just met at Karabi’s gathering last Monday evening.

By 4:45 the flight finally takes off, and Boston seems a possibility. The great convergence is Denis from Washington, DC (by plane), Judy from Cheyney, PA (by car), and Carrie from MGH, MA by metro. We plan a reunion at the Italian North End of Boston in our favorite restaurant, Terramia Ristorante, on Salem Street. There is definitely good reason to celebrate. Our accomplishments for the1,000,000+ Steps 4 OCD campaign. All that remains now is the Cake Walk around Jamaica Pond (5K) tomorrow. Do join us if you are in the vicinity!

We are raring to go and cross the finish line of this year’s walking success.

What miracles a good night’s sleep (longer than usual last night) can do to frame the new day. Emily, Kendra and David’s daughter, is not the only early riser today. I joined in too. A Kendra Breakfast Special enhances my already too short stay here in Alexandria. To witness firsthand the thoughtful and loving parenting of this couple gives me hope for the next generation.

Kendra and Otis (their senior citizen dog who loves car rides) drive me to the nearest metro station, Huntington (slightly north of Mt. Vernon). I’m totally psyched about today’s possibilities. What music can we play on the car radio to prepare me psychologically for today’s full schedule of appointments on Capitol Hill? Kendra and I examine the options and finally decide on “Lithium!” That sounds about right given recent activities on the Hill.

Returning to McPherson Station in DC where yesterday’s walk ended, I sit a short while in McPherson Park to recollect myself before proceeding. What will I say? How will I say it? What exactly am I asking my Congressional representatives to do? Why? Nathaniel’s story answers all those questions adequately. All I have to do is be mindful in the telling.

With the White House practically in front of me, I decide to call. The phone directory isn’t very helpful. I finally choose the comments & messages option. After describing to the responder in some detail my walk this spring, the White House wants a more simple version of my comment. Is mental illness ever simple? Was Nathaniel’s? I then ask to speak to a White House staff member. Not possible! Using every Asselin technique of persuasion honed over the last 65 years of my life, I tackle the challenge with fortitude and grace and from every possible angle. I want to talk to a responsible White House Staff member.

My hidden rationale: You took Tom Insel of the NIH away from my Monday afternoon appointment at NIH. Let me stop by to say “Hi,” and we’ll call it even. Mrs. Comments/Messages doesn’t have a category or protocol in place to handle my candid request. After 20 minutes have passed, she decides to hang up on me. What will you tell your boss when I report you to him next week?

Last Monday, the White House had a mental health symposium, but apparently it doesn’t seem interested in learning more about what mental illness might look like in Nathaniel’s compelling story.
Today’s foray into the political arena starts poorly. I better head to the Senate Office Building for my 11:30 with Senator Casey’s (PA) legislative staffers, Sara Mabry and Doug Hartman, followed by a scheduled photo shoot with Senator Casey at 12:30, and then on to Senator Toomey (PA) and Congressman Pat Meehan (PA) in the PM. Looks as if I’ve got a full day of conversations before me.

What brief descriptions would I use for each encounter? Senator Bob Casey’s staff are welcoming, good listeners. The photo shoot with the Senator is genuine and meaningful. In Senator Toomey’s Office, Theo Merkel, the legislative correspondent, gives me a few minutes, but not too long (in and out). The Senator is nowhere to be seen. As for Congressman Meehan, he’s in PA attending his 3rd son’s graduation from The Haverford School, but Senior Legislative Assistant Rachel Cook takes a long time to listen to my story, asks good questions, and visibly shows compassion for both Nathaniel’s and for our difficult journeys. The finale for the day is an unexpected visit to the office of Congresswoman Grace F. Napolitano (CA), a
recommendation from yesterday’s AFSP visit. The congresswoman is back in CA at the moment, but her Sr. Legislative Asisstant/Mental Health Advisor, Ane Romero asks me excellent questions and invites me back for a future visit. Congresswoman Napolitano of California is a committed advocate for mental health. That last visit of the day becomes the cherry on top of today’s Capitol Hill sundae.

Aware of how late it is, I barely beat the rain as I walk the mere three blocks to Robert Hordan’s home, tonight’s host (former high school mate at St. John’s). His Independence Avenue address in the 300 block is the perfect place for me to crash tonight for tomorrow’s final day of advocacy. We happily greet each other, continue the lively conversations as we dine out to a local delicious restaurant, and make plans for tomorrow’s hardy breakfast. I’m grateful for a Capitol Hill “bonne adresse.”