2024—Next Giant Steps Forward!

BDD still impacts the lives of 2% of the population. It demands serious scientific research and breakthroughs to help sufferers, and more importantly to prevent loss of lives. Had Nathaniel received early and effective intervention back in the 1990s, he would be a 38-year-old man today, possibly living with a partner, having a family of his own, and being a playful uncle to his nephew Arden — living the full and productive life he deserved. He had so much to give to so many with his incredible gifts. Today’s sufferers also deserve a life unburdened by BDD.

I invite you to consider making a contribution to support BDD research via this link. Thank you for your generous support.

IOCDF has agreed to keep this campaign open from April through the fall of 2024. 

2023—Growing to Give!

As we gear up for the tenth annual Walking with Nathaniel event (The 1 Million Steps 4 OCD Walk), I am inspired by the title of the non-profit, “Growing to Give,” where our daughter Carrie helps manage a small organic farm. “G2G” produces tons of good, nutritious food annually and distributes it to local shelters and food banks for Mid-coast Mainers experiencing food insecurity. The name appeals to me on so many levels. It emphasizes two elements that are also at the heart of the Walking with Nathaniel project— healthy offerings that serve those in need—but in this case, in the mental health world.

The mission at the International OCD Foundation states: “No one affected by OCD and related disorders should suffer alone. Our community provides help, healing, and hope.” When reviewing the Foundation’s offerings, I’m impressed by its aggressive outreach: Virtual Townhalls, Behavioral Health Training Institutes for therapists, the annual OCD Conference, the 1MillionSteps4OCD Walks in 35+ cities, Webinars in conjunction with Mass General Academy, Find a Therapist Directory, in-house resources for OCD and related disorders, research grants and awards, and that’s just a start. The Foundation’s offerings are “growing” in quality and quantity each year, and they are all designed “to give.” 

Likewise, our “Walking with Nathaniel” efforts support all of the above. Join us if you can.

2022—Walk as if you know where you’re going!

The above quote recently caught my attention when straightening out my desk. It is indeed poignant. I do need to know where I’m going, even during my daily goalless wanderings. If 2022 is the year we zoom off computer screens and settle back into in-person reality, then a destination map becomes a necessary pre-requisite and helpful guide. The International OCD Foundation, IOCDF, is in the process of strategizing it future trajectory. How does it envision itself 10 years from now? 15 years? 20? Without ignoring spontaneity and modifications in direction along the way, it’s good to have a goal and action plan in place. For 2022, our family involvement is simple—we’ll be “Walking with Nathaniel.” Tell me more? There’s the One Million Steps Walk at Carson Beach—South Boston on June 11, the annual in-person OCD Conference in Denver, CO on July 8-10; OCD Awareness Week in early October, the Virtual OCD Conference in November, as well as many other sponsored events to help us learn more about OCD and related disorders, to participate and build community, and to engage. As the path unfolds before us in the days ahead, let’s walk forward as if we know exactly where we’re going.

2021—Celebrating 10 years of Walking with Nathaniel

Niece Kaitlin Gentry wrote this blog on the occasion of Carrie & Daniel’s wedding on June 12^th.

When I think of a wedding, I immediately think of being surrounded by your very closest family and friends. It is likely the one time in your life that you will have your very favorite people from all walks of your life, in the same place at the same time. For my cousin Carrie, a huge piece of her heart was missing from her wedding a few weeks ago – her brother Nathaniel. As I thought of how much I was going to miss Nathaniel at this large family gathering, I couldn’t help but wonder how my Aunt Judy, Uncle Denis, and Carrie would cope with this huge void, on what was supposed to be one of the best days of their lives! Instead of letting myself be sad for too long, I decided to channel this emotion into something positive. How can I make this even an ounce easier for them? How could I help honor my cousin Nathaniel – without overshadowing the bride and groom? It also happened to be the 10 year anniversary of his passing, after his 13 year struggle with Body Dysmorphic Disorder (BDD), so I felt like a celebration was necessary for that reason alone. Thus, the Walking With Nathaniel (WWN) last minute shirt fundraiser was created, with the help of my dad (Carrie & Nathaniel’s Uncle Bill). 

In about a week, we sold nearly 40 WWN shirts to be worn at our family brunch, the day after their wedding. Members from both sides of the family purchased shirts to raise money and awareness for BDD and the International OCD Foundation. I especially loved seeing members of Daniel’s (the groom) side of the family wearing the shirts that Sunday, all of whom had never even met Nathaniel. We raised a couple hundred dollars, not a huge amount, but I still think Nathaniel was smiling down on us on that beautiful morning. We will always miss him, but it felt so wonderful to be together as one big “new” family – with our sweet cousin/brother/son/friend/nephew/grandson at the forefront of our minds. A truly special way to wrap up a magical weekend!

2021—Emerging Life from the Pandemic

It’s not exactly life back to normal yet, but glimmers of hope and possibilities emerge on the horizon. Although the COVID-19 vaccination process unfolds slowly and many challenges arise in such a massive undertaking, the Year After definitely does not resemble the Year Before. We breathe a guarded sigh of relief and cross our fingers for better days to come.

In confinement our advocacy for BDD was subdued. However, IOCDF pushed forth in full force into the Virtual World with Town Halls and Live Streams on Facebook & YouTube, Virtual Events (Research Symposium, OCD Camp, Hoarding Meeting, Spanish-speaking Conference), and Webinars. A Virtual Walk replaced the traditional in-person event, and with surprising, unexpected success. The not so good part is that we didn’t get to gather in-person as a community. This absence demands much resilience on our part—to trust that the web of support is still there should we need it.

My seat at the table of the Foundation as a director emeritus provides me with an understanding and deep appreciation of the Foundation’s mission “to help everyone affected by OCD and related disorders to live full and productive lives.” Let’s find comfort and strength as spring emerges with its fierce ability to cultivate hope in the days ahead.

2020 Virtual OCD Walk—October 10

This year’s annual walk will look different. Given the pandemic, IOCDF is going virtual. Don’t let the change of venue scare you away, however. We can still achieve solidarity and build community–embracing uncertainty, one step at a time. You can register for the walk, join the Walking with Nathaniel Team, create your own team and fundraiser, support mine, or simply donate to the event. Every contribution helps the Foundation achieve its mission “to help those affected by OCD and related disorders (like BDD) to live full and productive lives.” As my wife Judy’s grandmother used to say, “It never gets better than this!” Walk on!

Searching for additional BDD resources?

Explore IOCDF’s BDD Website @ www.helpforbdd.org.

BDD-Related Quarantine Tips During COVID-19, a Blog Post by Angela Fang, PhD on IOCDF’s BDD Website–click here

2020—Walking with Love and Possibilities

An old year ends and a new one begins bringing with it new possibilities. How will we advocate for BDD/OCD in 2020? What new options have we not yet explored? Firstly, let me report that BDD Awareness in mental health has grown by leaps and bounds in recent years. Sufferers now have better access to effective care. New treatment protocols emerge, even with the possibility of using apps in remote geographic treatment deserts. The Annual OCD Walks grow in numbers around the country, and even internationally, as participants boldly seek caring communities to feel safer and be better understood. Last year’s walks brought it a total of $210,000. Participants at the Annual OCD Conference’s BDD Track fill the seats and the carefully guarded questions of the past are now boldly asked. We all know that BDD is cruel, unrelenting, and undeserving. Yet so many sufferers go undiagnosed, ashamed to confess the obsessive thoughts that torment them on a daily basis. But we are no longer alone! We are no longer in hiding. We no longer blame ourselves for a disorder that’s indiscriminate of its victims. We no longer shy away from a wholeness we all deserve. Let 2020 be the year that takes a significant step forward  in recognition, treatment, advocacy, and support.

Boston June Walk 2019

The 2019 Boston OCD Walk was held Saturday, June 1 at Mother’s Rest @ Carson Beach, South Boston. This was a change of location from the last 6 years. Jamaica Pond is apparently under construction. But the new venue proved really exciting. It was time for change and change is good! We got a view of the ocean and we walked fewer miles (2 instead of the 3, and no more going around the pond twice either).

The OCD Walk celebrates Nathaniel’s courageous spirit by its very existence as an annual event. The Walking With Nathaniel Team is engaged in doing the very work he himself can no longer do—to bear witness publicly to the horrors of BDD and OCD. Together we walk each step in his memory and stand strong as a Walking Team to honor his life and to make his struggles on earth matter. Judy, Carrie, Daniel and I are always present for the event. 

Will you please join us in June 2020? You can walk in person or virtually from afar. With 21^stCentury technology, anything is possible. I’ll post the registration link next spring. So stay tuned.

2019—New Year, New Opportunities!

The Walking with Nathaniel Project, launched in 2012, enters its eighth year, and one thing is clear: awareness and research about BDD has grown steadily. We have come a long way in a short time.

• The Walk: The annual IOCDF Walks, inaugurated with one walk in Boston in 2013, have mushroomed. Twenty-one cities now host walks. The 2018 Boston walk gathered 450 sufferers, family members, friends, therapists, and researchers to share their stories and support each other.
• The Talk: Conversations about brain disorders like OCD and BDD, guarded a decade ago, occur more openly now, with less shame, blame, and judgement. Media coverage, web information, and videos about BDD abound.
• The Gathering: Last summer’s annual OCD conference in Washington, D.C. attracted 1,971 attendees — a new record. The BDD Track at the Conference drew many attenders, and Judy and Denis offered a support group for loved ones of BDD sufferers.

Our thanks go to everyone who continues to help make these advances possible.

2018—BDD Research Benefit Concert

We hosted the third Walking With Nathaniel Benefit Concert for BDD Research on Saturday, April 14, 2018 at 7:30 PM at Westtown School Meeting House, West Chester, PA. This musical celebration featured two Haverford College a cappella groups (the Humtones and the Ford S-Chords), faculty and guest singers, the Westtown Upper School Chorus, a family bluegrass ensemble, and more! A reception followed. Approximately 150 guests attended the event. Donations can still be made till May 31, 2018 through Eventbrite.

2018—New Horizons, New Challenges, New Possibilities

Another turn of the Earth around the sun brings us to 2018. Since the launch of the Walking With Nathaniel website in 2012, we are encouraged to see that more people are talking openly about brain disorders. Last year the IOCDF June Awareness Walks across the country brought together hundreds of sufferers, family members, and friends coming to support each other. In October 2017, a new walk was inaugurated in Washington D.C. New brain studies and research projects abound, with information emerging about genetics and functions of the brain that help explain anomalies like BDD. Although BDD is complex in origin, expression, and treatment, we know that proper understanding, strong support and evidence-based treatment can make a big difference.

Highlights to come in 2018:

• the BDD Research Fund Concert at Westtown on April 14
• the 1 Million Steps for OCD Walks nationwide in June
• the Annual OCD Conference in Washington, D.C July 27-29
• the second OCDCapital Walk on the Washington Mall on October 12.

Every step counts.

Spring 2017—The June Walk

The flagship 5th Annual 1 Million Steps 4 OCD Walk in Boston took place once again at the beautiful Jamaica Pond on Saturday, June 3, 2017! This year’s walk was “practically perfect in every way,” as Mary Poppins would say. The weather cooperated and over 425 people attended (compared with 100 participants at the first walk five years ago). Denis got to emcee the event–what an honor!

Below is the photo of this year’s Walking With Nathaniel Team. Not quite everyone is accounted for; some members had to leave early and our Canadian cohort of 5 (The Bangs Family) missed the photo entirely — so sorry about that! Our Team’s fundraising efforts topped $8,000, eking out the lead. THANK YOU all for your support of the Walking With Nathaniel Team. We were an impressive bunch.

2017—Walking With Hope and Love

Mental illness does not discriminate; it strikes without regard to nationality, race, ethnicity, gender, age, sexual orientation, income level, religion, or political bent—ironically a model of diversity and inclusion. The good news is that 2016-17 brought new hope for BDD/OCD sufferers, and expanded the loving community of support for families in the trenches.

By contrast, the contentious presidential campaign left America divided. Retorts of “Get over it!” or “Move on!”—whether one’s candidate got chosen or not—overlook the elephant in the room: an entrenched ideological chasm. Yet the reality is that we all have more in common than we realize and much to gain from unity and cohesion. Hope and love, rather than more acrimony, can mend the rift.

Nathaniel often liked to remind my wife and me to take the high road whenever we got irritated by a situation at a store or restaurant and would start to take it out on the person serving us, even if they weren’t necessarily at fault. I hear his voice in my ear often these days when I start to get vindictive or angry about the political climate. Focusing on hope and unconditional love is a better route; it impacts not only me and those I encounter, but eventually local communities, states, the country, and the world. Positive change grows concentrically and exponentially.

Our OCD/BDD advocacy follows a similar path. This year in June we celebrate the fifth anniversary of the 1 Million Steps 4 OCD Walk in Boston. The annual Walks have grown in number and attendance across the country in the past five years, creating a burgeoning OCD community. Judy, Carrie, and I will be at Jamaica Pond on June 3 for the 2017 walk, and in July we fly to San Francisco for the Annual OCD Conference where we will offer a BDD Panel led by participants who have experienced BDD in their lives and are “experts” in telling the stories of their journeys. In addition, Judy and I will offer a Support Group for family members who need compassionate self-care if they are to remain steadfast in their support role. In the world of research, new therapeutic directions are emerging. The Karolinska Institutet in Sweden has developed BDD-NET, an I-CBT trial for English-speaking sufferers, drawing on promising results in Swedish samples—another big step in making evidence-based mental health treatment more accessible. 

Our work to erase the anguish and stigma of mental illness thrives on hope and love. Nathaniel would approve.

Summer 2016—Walking in England

Although I initially didn’t consider my summer trip to England as an official Walking with Nathaniel event, the bi-annual Quaker Pilgrimage sponsored by Friends Council on Education seems a good fit in hindsight. Located in the picturesque Lake District of North West England, the Quaker Retreat Center of Glenthorne in Grasmere, Ambleside welcomed thirty Americans to what is commonly called “1652 Country”—the geographic and historic hub of George Fox, the 17th Century founder of Quakerism. Each morning, several pilgrims and I gathered at 6:30 a.m. to wander the surrounding hills and discover the English countryside with the same open and care-free spirit of early Friends. During the week I logged over 50 miles as we wandered the hills, retraced the footsteps of early Quakers and steeped ourselves in the history of this radical religious movement. I was able to share Nathaniel’s story with fellow travelers and discovered again that advocacy and awareness can happen any time, any place, when we experience the outdoors directly, ground ourselves through exercise, and open our minds, hearts and spirit to what is and to what could be.

 

Spring 2016—OCD Walk

On June 4^th the OCD Community gathered to walk around Jamaica Pond, Boston. This annual event, now in its 4^th year, gave us an opportunity to connect with many people affected by OCD & related disorders and to foster greater awareness. The 1 Million 4 OCD Walk grew out of Denis’s original pilgrimage by foot from Cheyney, PA to Boston in Spring 2012. The 525-miles logged added up to well over 1,000,000 steps, thus the name of this annual walk event. This spring seventeen family members and friends joined the Walking with Nathaniel Team in person, walking the 3-mile route around the pond with Judy, Denis, and Carrie. Others joined us virtually through donations. Nathaniel’s spirit was certainly present too. Together, the Walking with Nathaniel Team raised $3,530 for IOCDF. Bravo! With each Annual Walk, the OCD Community grows stronger in numbers and in spirit.

 

2016—Awareness Matters

We’ve walked well over 1500 miles in pilgrimages since 2011 with the goal to spread greater awareness about BDD. Although no new pilgrimage is planned for 2016, there remain many opportunities to continue our efforts. Public awareness about BDD is slowly but surely growing, as evidenced, for instance, by the March 6 article in The Guardian. How we would have felt supported by such an article during Nathaniel’s illness! Families continue to contact us through the Walking With Nathaniel website, seeking help for their children with BDD. We are always happy to provide what we would have wanted for ourselves: someone to simply listen to our story of struggle and to understand in some measure our son’s and our family’s suffering.

The Body Dysmorphic Disorder Special Interest Group (BDD SIG) at IOCDF meets three or four times a year by phone and in person at the Annual OCD Conference to discuss strategies to make information and professional support more readily available to sufferers, their families and their friends, and to ensure the best ongoing research into this illness. The group consists of an impressive team of experts in the BDD field and also includes individuals like us who are dedicated to spreading awareness. One major undertaking of the BDD SIG was the creation in 2014 of the BDD website, a new sub-section of the IOCDF website—where anyone can find the most up-to-date-information about BDD. It is a treasure-trove of information.

Each action we take—planned pilgrimages, annual awareness walks, the BDD Mini-series at the Annual OCD Conference, the work of the BDD SIG, formal and informal conversations among professionals, sufferers, their families and friends—helps to build the momentum of awareness, and helps to eradicate prejudice and ignorance about brain disorders.

Fall 2015—Il Cammino di San Francesco

It has been a lifelong dream to be present in the hometown of St. Francis on his feast day, October 4. The dream finally came true! This fall Judy and I traveled to Europe to walk the newly restored Way of Saint Francis (Il Cammino di San Francesco) from Rome to Assisi. We traveled the 150 miles by foot from the Eternal City to the birthplace of Francis. With trail map in hand and a rough sense of direction (we have heard that the Way has fewer directional signs than the Camino, and it’s true), we passed through many small Italian towns along the way—Monte Sacro, Monterotondo, Ponticelli, Reiti, Terni, Spoleto, and Foligno, Spello, traversing the province of Umbria lengthwise and appreciating its rustic and beautiful landscapes. We think Saint Francis, Patron Saint of the environment, approved of our petroleum-free efforts and simplicity of dress! We blogged as we went, a tradition that began in 2013 on the “Camino de Nathaniel” (Cheyney, PA to Boston). We raised awareness about brain disorders by sharing Nathaniel’s story when possible, while we boosted our own mental health through hard physical effort in a carefree Franciscan spirit. Dear friends and retired Westtown colleagues, Tim and Terry James, joined us for the final week of the walk. Buon Cammino!

Spring 2015: Further down the path

Year four brought new opportunities for Judy, Carrie, and me to raise awareness about OCD/BDD by sharing Nathaniel’s story. On April 25, 2015, we offered a concert at Westtown School, a second “Singing Us Forward” event (the first was in April 2012 before my pilgrimage to Boston). A collection of artists shared their vocal and instrumental talents to raise funds for BDD research.

It is puzzling why BDD, a significant brain disorder that affects up to 2% of the population, attracts far fewer donations than illnesses which impact fewer people. Granted, there is nothing glitzy about a disease whose sufferers struggle in silence, are often housebound, and live in isolation. There is nothing sensational to catch our attention unless we are those sufferers, their families, or their friends. And let’s be honest; brains disorders still illicit prejudices. The millions of people with brain disorders deserve the equivalent of the ice bucket challenge to support research and treatment.

In April, 2015, Carrie successfully ran the Boston Marathon on the Samaritans Team—a New England organization that supports suicide survivors, intervenes with those who are considering taking their lives, and educates the public about suicide. Click here to read her captivating blogs as she prepared for and tackled this auspicious event. Last year she trained faithfully through a harsh Boston winter, but an injury two weeks before the race forced her to drop out. The 2015 winter surpassed last year’s record cold and snowfalls, yet Carrie kept up her training. On race day, she completed the course in 4 hours in 43 degree rain with a 20 knot headwind the whole way. What resolve and determination! Over the past two year, she was able to raise over $28,000 for this wonderful cause.

On June 6, 2015 the third annual 1 Million Steps 4 OCD Awareness Walk took place at Jamaica Pond in Boston. I like to think that our collective walking and running steps — Judy’s, Carrie’s and mine — have helped shape this annual event for the International OCD Foundation. Many people walked with us that day to raise needed funds and to remove the stigma associated with these disorders. It is by coming together for such an event that we create community and a strong web of mutual support.

2014: The Journey Continues

7,400,000 steps (over 3,700 miles) later, we continue to tell Nathaniel’s story. One pilgrimage has morphed into another, and the legacy of miles has had its impact. More people know about BDD and OCD and are willing to seek help, share stories, and support each other. When we walked the Camino de Santiago in the spring of 2011 after Nathaniel died, Judy, Carrie, and I knew that our journey in Spain was only the beginning, and our commitment to raise awareness has not diminished since. We are humbled by the unanticipated ways that Nathaniel’s story has spread.

In the fall of 2013, our daughter Carrie was selected to join the Samaritans Team to run the 2014 Boston Marathon. Her commitment to the project never faltered despite a relentless winter. If running was her brother’s passion in life despite his illness, then she would run these 26.2 miles to honor him at his game. Her weekly blogs described her rigorous training routines, the capriciousness of the New England winter, and the inner landscape of her emotions during her long runs. Judy and I are in awe of her fortitude.

A mere two weeks before the race, Carrie slipped in stocking feet on the wrought iron staircase in her apartment and badly fractured her big toe; running was in an instant no longer an option. Despite this devastating disappointment and sense of incompleteness in being unable to finish a herculean task that she was more than ready for, Carrie rallied for her teammates on race day and cheered them from the sidelines. As I stood by her side on Heartbreak Hill (mile 21), I knew that our choice of location was poignant not only for the runners. Her heart needed mending too. She joined the race with teammate Katy for half a mile, broken toe be damned.

On June 7, 2014, the second annual 1 Million Steps 4 OCD Awareness Walk took place place at Jamaica Pond in Boston, and a large crowd looped the Pond twice, building solidarity and spreading awareness. We can feel the momentum building. Nathaniel didn’t choose his illness, but he walked it with courage. We are doing the same to help others.

2013: Nathaniel’s spirit lives on

Who could have anticipated that when I took over a million steps in the spring of 2012 to get from Cheyney, PA to Boston in honor of Nathaniel and to raise awareness about BDD and OCD, that my experience would reap so many rewards? I talked with 250 people en route, received support from hundreds of donors, and raised over $30,000 for the International OCD Foundation. We have met and talked with many courageous families who have also been ravaged by these cruel disorders.

Building on the success of my 2012 walk, the International OCD Foundation launched a nation-wide campaign “1,000,000+ Steps for OCD Awareness” –  the first annual walk that encompassed supporters from across the county, culminating in a 5K walk in Boston on June 8, 2013. Walks are held annually for Aids, Diabetes, and Breast Cancer, because people still suffer from these illnesses. It is no different for OCD and BDD which continue to disrupt the lives of sufferers and those who love them. Until there is greater awareness of these disorders and more effective treatment or a cure, we have work to do.

On the second anniversary of Nathaniel’s death, the void of his absence still profoundly affects our family and his friends. We miss him, and we want his life to matter. I thought last June I would be finished walking, but clearly the journey to find meaning and solace has only just begun. As part of the “1,000,000+ Steps for OCD Awareness,” I will start a new pilgrimage in May, 2013 – “Walking With Nathaniel South” from Cheyney, PA to Washington, D.C. I am thrilled to be adding 920,000 steps more to this important cause.

THE INSPIRATION

When a spiritual seeker once asked the Buddhist teacher Thich Nhat Hanh how to recover from the loss of her son, he pondered awhile, then answered, “Walk!” On April 15, 2011, our 24-year-old son Nathaniel took his own life after a 13-year struggle with BDD (Body Dysmorphic Disorder). This devastating illness robbed the world of a magnificent human being; Nathaniel was fiercely intelligent, unfailingly kind, and universally loved. He could make other people laugh like no one else. As my wife Judy, daughter Carrie, and I grappled with the injustice and enormity of our loss, we took Thich Nhat Hanh’s advice. We flew to Spain and walked the ancient pilgrimage route, the Camino de Santiago, to grieve and to honor Nathaniel’s life. While in Spain, I caught “Camino Fever” and developed symptoms back home––the irresistible urge to walk. During these peregrinations the “Walking with Nathaniel” project was born.

See a gallery of the Camino de Santiago Pilgrimage

THE WALK

From April 24 to June 7, 2012 a second pilgrimage from my front door in Cheyney, PA took me to Boston, MA, home of the International OCD Foundation. The 552-mile route included stops at hospitals, clinics, doctors’ offices, and treatment facilities that were part of Nathaniel’s journey, as well as places of joy such as The Bryn Mawr Birth Center, Goshen Friends School, The Shipley School, Westtown School (where he was a student, teacher and coach), and the Good Fellowship Ambulance and EMS unit where he often volunteered.

THE GOAL

I walked to raise awareness about BDD and to generate funds for desperately needed research. By finding better treatment, we can offer to others the hope that Nathaniel needed and so richly deserved. To support the walk, friends and family created their own events, some joined me on short segments of the walk, and many contributed to the OCD Foundation to transform Nathaniel’s suffering and our family’s pain into new possibilities for others.

Let the cry of the Camino pilgrims be ours, “Ultreya!” (“Let’s go for it!”)