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 4th the OCD Community gathered to walk around Jamaica Pond, Boston. This annual event, now in its 4th 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.
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.
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.
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.
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!”)