All about the Annual Hoarding Meeting: An Interview with Gail & Randy

We are excited to announce that for the second year in a row, we will be holding the Annual Hoarding Meeting at the IOCDF’s Annual OCD Conference. The 2nd Annual Hoarding Meeting provides critical information to individuals, families, and loved ones affected by hoarding disorder, with the goal of improving access to effective and compassionate treatment and care. The Annual Hoarding Meeting also offers an opportunity for professionals — from therapists and social workers to firefighters and other public safety officials — to learn how to most effectively and compassionately work with individuals with HD. Professionals will hear from leading researchers and experts in the field, and will walk away with new understanding and practical strategies for working with those affected by HD.

We asked Gail Steketee, MSW, PhD, and Randy O. Frost, PhD, both members of the Conference Planning Committee who helped to build the Annual Hoarding Meeting program, to answer a few questions about why this meeting is so important. Continue reading

One Step at a Time: Walking for OCD in Sacramento

Jeff BellFor the past six years, I’ve had the great privilege of serving as a national spokesperson for the IOCDF, and during that time, I’ve enjoyed participating in all kinds of conferences, talks, and special events.  None has raised my excitement more than the 1 Million Steps 4 OCD Walk. There’s just something magic about what this project has to offer.

First, this is our chance to come together as a community—to show the world how united we are in our commitment to raising awareness around OCD and related disorders.  Just think about the stigma-busting message we are sending by bringing together people living with OCD and their loved ones, professional treatment providers, and our generous supporters from across the country.  We are saying, loudly and proudly: “We are facing this challenge together, so no one ever needs to feel alone.”

Second, 1 Million Steps 4 OCD offers us a powerful platform for raising money—critical funding for research, education, and a variety of IOCDF programs that support countless people impacted by OCD.  By providing the ability for donors to walk either in person or virtually, this campaign allows anyone, anywhere to get involved.  Grassroots fundraising at its best!

Finally, as anyone who has followed my own outreach knows, I am a firm believer in the notion that we help ourselves by helping others. Many of us impacted by OCD have been through—or are currently going through—great pain because of this disorder.  By affording us an opportunity to turn this adversity into advocacy, 1 Million Steps 4 OCD allows us to be of service to others impacted by OCD, and in so doing, derive an extremely motivating sense of purpose.  What a gift!

On Saturday, May 10, I will be serving as emcee of this year’s inaugural 1 Million Steps 4 OCD Walk in Sacramento.  If you’re in the area, please come join me and the many other West Coast walkers who will gather in Southside Park, a popular park just blocks from the California State Capitol.  To learn more, visit: www.iocdf.org/walkNORCAL.

Walk in Sacramento

For those of you in the Boston area, be sure to join the East Coast walkers on Saturday, June 7, at Jamaica Pond, site of last year’s phenomenally successful inaugural walk.  (To learn more about the Boston walk, visit: www.iocdf.org/walkBOSTON.)

And please remember that if you can’t take part in the Boston or Sacramento walks, you can always join the walk “virtually” by setting up a fundraising page and pledging to Walk for OCD between now and June 7th.  This can be something you do on your own, such as your daily morning walk or run, or you can gather a team of friends and family to walk with you at a local park on a specific day.  If you sign up by May 10, 2014, you can even receive your walk T-shirt in time to wear it as you walk.  To learn how to walk in your community, visit: www.iocdf.org/virtualwalk.

If all of this sounds a bit daunting, I hope you will follow the advice of my dear friend Denis Asselin, who walked over 500 miles—or roughly one million steps—in memory of his son Nathaniel, a longtime sufferer of severe body dysmorphic disorder (BDD) and OCD.  As Denis told me, you simply make the journey one step at a time.

Gratefully yours,

Jeff Bell
IOCDF Spokesperson and Board Member

OCD, Depression, and Suicide: There Is Hope

Eight years ago, I was so depressed I considered committing suicide. My obsessions had completely taken over my life—not only were they daily distractions from work and friends, they were terrible. These obsessions, the fear that I might harm a child, didn’t just consume my free time. They consumed me. Nothing about life was enjoyable anymore. Not my wonderful boyfriend, Peter, who’s now my husband. Not visits with my parents. Not my favorite TV shows, or books, or dinners out.

Not even shoe shopping! On St. Patrick’s Day weekend in 2006, Peter and I went to visit a friend in New York City, and we all went shopping. Peter wanted new shoes, so we headed into a crowded Puma store to browse. I felt a small jolt of panic when I saw a little girl with her father. It was the middle of the week, a school day, so all of the other shoppers were adults, but this one child threw me into a cold sweat. She was sitting on one of the large, square benches where shoppers could try on shoes, minding her own business. To my dismay Peter stopped right in front of her.

I kept my back to her as Peter checked out shoes and asked me what I thought of each pair, but it was as though there was a force behind me. This girl’s mere presence made me feel anxious and I felt compelled to turn around every few seconds to see if she was still there. I felt like I was fighting a magnetic force as I tried desperately to keep my mind on the task at hand, which should have been at the very least simple and at best enjoyable. I finally turned around after a few minutes and saw that the girl was gone. “Thank God,” I thought, exhaling a mental sigh of relief.

This wasn’t normal. It wasn’t right. I knew I couldn’t live life as I was living it, but I didn’t want to ruin the lives around me by taking my own life. Peter would never get over losing the love of his life and never knowing why I committed suicide, and my mom would be devastated. I broke down every time I thought of her—losing me would destroy her, and knowing that kept me going.

Although having a reason to carry on was a good thing, crying every time I thought of my mom was not. Crying at work, at home, in the car, at night, in the morning, in the shower, in front of the bathroom mirror to make sure it was really me and not a stranger—this was not a life worth living.

I got help as soon as I got home from New York City. Being so miserable on a vacation drove home how badly I needed it. You can get help, too. No matter how low you may feel right now, there is hope for a better life. There were several times of my life when I thought I would never feel happy again. I would have settled for neutral. Depression is cruel, but it doesn’t have to win.

Don’t go through this alone. Tell someone how you feel. See a psychiatrist. Talk about the possibility of an antidepressant, and therapy. Exercise. Eat well, to nourish your brain. Hug your friends and family. Journal. Call 1.800.442.HOPE (1.800.442.4673) or 1.800.273.TALK (1.800.273.8255). Do whatever it takes to push past this.

My life is worth living now, and it has been for a long time. That didn’t feel possible eight years ago, it really didn’t. I thought that even if I stopped obsessing I could never forgive myself for what I’d already thought. But I did both. I was able to gain control over my obsessions, and I’ve realized that my bad thoughts were never my fault—OCD tortured me. I was the victim. Now I’m the victor.

Keep your chin up. Write to me if you need someone to talk to, someone who understands.

You are worth it!

Book Giveaway! Being Me with OCD

Alison Dotson’s new book, Being Me with OCD: How I Learned to Obsess Less and Live My Life,  is now available in paperback!  To celebrate, we are excited to be able to share another excerpt from the book on the blog. Check it out, and then feel free to ask Alison questions in the comments below. One lucky commenter will win a free paperback copy of Being Me with OCD. Just comment below to be entered into the drawing. We will pick a winner at 5pm on Friday, 3/14/14!—Carly

I grew up in a safe and loving home with trusting, understanding, and warm parents, two older brothers, and a West Highland white terrier named McDuff—or, less formally, Duffer. Mine was a comfortable existence, maybe even sheltered. I realized early on that not everyone’s life was as carefree as mine, and it didn’t sit well with me. How could I be so lucky while others suffered? It seemed to be only a matter of time before my luck ran out, that my life would take a turn for the worse. Irrational fears began to take over.

When I read Deenie, a Judy Blume novel about a teenage girl with scoliosis, I lay awake for several nights, convinced I had scoliosis, too, and would have to wear a cumbersome back brace, just as Deenie had. I pressed my back into the floor to see how straight my spine felt, and I tried to examine my back in my vanity mirror.

When I saw The Ann Jillian Story, a TV movie about an actress who survived breast cancer, I believed I must also have a cancerous tumor. Over and over I imagined myself poking a dinner fork through my flesh and pulling the growth out. I would lie in my bed and cry, asking God why I had to have breast cancer, why I had to die. One day, worried about me locked away in my bedroom at the end of the hall, my mom knocked on my door. Not wanting to devastate her with my “news,” I pulled myself together and opened the door a crack. “Are you okay?” she asked. I nodded numbly and told her it was my stomach—again.

After she left, I stood at my bedroom window, watching my brothers, dad, and dog play in the front yard. Duffer was running around in joyful circles, over and over again, and I choked up, thinking, “He’s so full of life.” I felt incredibly jealous.

And, perhaps most terrifying, when I watched a TV movie about a boy whose father had set him on fire during a custody dispute, I believed I was destined to be horribly marred in a fire. I would sob in bed at night, begging God to reconsider. Before bed I’d inspect my heating vents, making sure there weren’t pieces of paper or T-shirts covering them.

Every time I thought I was over one fear, a new fear managed to weasel its way into my psyche, making it nearly impossible to sleep or concentrate.

Despite all of these horrifying images and irrational destinies I imagined for myself, I never told a soul. I never let anyone see me cry, and if they happened to, I lied about why I was crying. If only I had told my mom something, anything. She would have pulled me onto her lap and held me close, telling me not to be afraid. Maybe she would have helped me see that the things I feared were baseless. Maybe she would have helped me work through my fears—my obsessions—so they didn’t have so much control over me.

But I kept it all inside. Every panic-inducing fear I faced for nearly 20 years, I faced alone. Not because I had to. But, rather, because I somehow understood that as terrifying as these persistent and intrusive fears were, they weren’t normal. They were so heavy. They felt insurmountable. What could anyone do to help me? What was the point in sharing my fears?

I was like a typical teenager in most other aspects of my life, talking with my best friend about how scared I was to be kissed for the first time, and how scared I was to not be kissed for the first time. I worried aloud about tests and homework and boys and girls and clothes, but I kept the dark stuff hidden where I thought it belonged—deep inside me until I could manage my own way out of the abyss. Years passed and obsessions intensified. The nature of the obsessions changed, but they never really went away. There were obsessive peaks and valleys, good days and bad days, even good months and bad months.

By the time I was 26 years old I was utterly exhausted. I had been fighting a particular type of obsession—my fear that I would harm a child—off and on for about five years. It intensified when I was in serious relationships, because marriage and family felt like logical next steps. That fear remained in tucked-away corners of my brain even when I was single. It was becoming as stubborn as I was—it wasn’t willing to leave, and I wasn’t planning to tell anyone what was going on.

A mental showdown.

I won that showdown. But not before I hit rock bottom, a few months after I met and started dating the man who would become my husband. So I guess you could say I fell from cloud nine and slammed into rock bottom, an even more devastating experience than I could ever have anticipated.

Excerpted from Being Me with OCD: How I Learned to Obsess Less and Live My Life by Alison Dotson, copyright © 2014. Used with permission of Free Spirit Publishing Inc., Minneapolis, MN; 800-735-7323www.freespirit.com. All rights reserved.

Conference Schedule and Registration Now Live!

2014 ConferenceWe are happy to announce that a preview of the schedule for the 2014 Conference is now available, and that registration is now open!

We are so excited about this year’s conference in Los Angeles — this will be our 21st Annual OCD Conference, and we hope to make it the best yet. The conference will feature more than 100 presentations, workshops, and seminars, as well as 33 evening activities and support groups. Our presenters include some of the most experienced and knowledgeable clinicians and researchers in the field, as well as people with OCD and family members who are willing to share their stories.

Continue reading

2nd Annual 1 Million Steps 4 OCD Walk! BOSTON – SACRAMENTO – YOUR TOWN

Social Media BadgeLace up your sneakers, put winter behind you and join family, friends, neighbors, colleagues, and treatment providers for the 2nd Annual 1 Million Steps 4 OCD Walk!

Join hundreds; yes hundreds of walkers, volunteers, and a generous group of donors that will come together as an OCD Community.

YOU made last year’s walk a huge success, and so we wanted to make our plans for this year even bigger.  As such, while our flagship walk will take place in Boston on June 7, 2014, we are please to announce that we are becoming bi-coastal!  The IOCDF and OCD Sacramento (an affiliate of the IOCDF) will co-host the first 1 Million Steps 4 OCD 4K Walk in Sacramento on May 10, 2014!  The Sacramento Walk will be the first of many walks we intend to create all over the country in the coming years.

There are many ways in which you can walk and raise awareness and funding for OCD programs.  Together, they will increase awareness around OCD and related disorders and make a powerful statement about our shared commitment to help people living with OCD and raise the dollars that make it possible for the IOCDF to develop, fund, and facilitate much-needed programs—programs that improve the lives of individuals and families… programs that provide hope.

The Walk is about community.

Three generations walking together at the 1st annual 1 Million+ Steps 4 OCD Awareness Walk.

If you have ever been to the IOCDF’s Annual OCD Conference, you know what I mean when I say community.  You find yourself among folks who understand OCD, the experience of living with OCD and to some extent… they understand you. It is a powerful feeling. I felt this same sense of community at last year’s Walk in Boston — and it, too, was powerful.  Walking with a diverse group of 200 plus people of all ages, wearing the same T-shirt was not only powerful it was empowering!

The IOCDF and our affiliates bring together people, resources, and programs to help people living with OCD and related disorders — but we could not do our work without the support of our diverse community. Get involved with our work, and make a lasting impact on local families and communities.

The more visible we become the more we will create change.

BOSTON & NEW ENGLAND

Jamaica Pond, BostonThe flagship 1 Million Steps 4 OCD Walk in Boston will take place on Saturday, June 7, 2014. Members of the OCD community, including friends, family members, coworkers, children, (and even dogs), will gather at Jamaica Pond in Boston to meet others in the OCD community, raise awareness about OCD and related disorders, and raise funds to help support the programming and resources of the IOCDF. Last year, more than 300 participants raised $75,000 and walked 8.3 million steps in Boston and in their own communities all over the country.  If you live in New England and would like to attend the Boston walk, click here:  www.iocdf.org/walkBOSTON

SACRAMENTO & NORTHERN CALIFORNIA

southsidelakeThe first annual 1 Million Steps 4 OCD Walk in Northern California on Saturday, May 10, 2014!  All proceeds from the walk will support programs of both OCD Sacramento and the IOCDF.  The walk will take place at Southside Park, a popular park in downtown Sacramento that is located just blocks from the State Capital.  If you live in the Northern California area and want to participate in the Sacramento Walk click here:  www.iocdf.org/walkNORCAL

IN YOUR OWN TOWN

Even if you can’t take part in the Boston or Sacramento walks, you can join the walk “virtually” by setting up a fundraising page, and pledging to Walk for OCD between now and June 7th.  This can be something you do on your own, such as your daily morning walk or run, or you can gather a team of friends and family to walk with you at a local park on a specific day.  If you sign up by May 10, 2014 you can even receive your walk T-shirt in time to wear it as you walk.  To walk in your town, click here www.iocdf.org/virtualwalk

There are so many ways to get involved with the IOCDF and to make a difference the Walk provides an opportunity to have fun and advocate for a better understanding of OCD.

Each participant’s motivation to walk is unique; it may be for themselves their child, a loved one or a neighbor.  1 in 100 people in the US are living with OCD. And many of those people don’t have access to effective treatment. Help us change that. Take a step and be part of #1million4OCD.

Here are some ways in which you can join:

  • Help spread the word about the Walk

    • Email friends and family who might be interested in learning more or participating in the virtual or in person walk
    • Post links to our walk pages on your FaceBook or Twitter accounts
  • Start your own walk team!

    • When you register you will be asked if you want to join an existing team or start your own.
    • If you want to start your own team, pick a team name.
    • Then invite your friends, families, schoolmates, coworkers, etc., to join your team and walk in Boston on June 8th or become a virtual walker with you
    • Encourage individuals to make donations to your team via your fundraising page as well!

Historical Profiles of Individuals with OCD: Nikola Tesla

Nikola Tesla: Persistence in the Face of Mental Illness

In this new blog series, we will be profiling famous individuals who continued to persist and make a lasting impact on the world despite the challenges and debilitating nature of untreated OCD. Our first blog focuses on Nikola Tesla.

Nikola TeslaNikola Tesla is enjoying something of a renaissance today. He is the namesake for the innovative electric car company and is rumored to be the subject of a forthcoming movie by Disney. He has also become a hero for geek culture worldwide — the famous internet comic The Oatmeal has devoted multiple comics to Tesla, and even started a campaign to raise money for a Tesla museum when Tesla’s original laboratory in upstate New York went up for sale.

But even if you’ve heard the name in passing, you may not know much about Inventor, Engineer, Physicist, and Innovator, Nikola Tesla. And what is maybe even less well known is that he struggled with Obsessive Compulsive Disorder. Here’s a brief look at the man behind the myth…

“I do not think there is any thrill that can go through the human heart like that felt by the inventor as he sees some creation of the brain unfolding to success… such emotions make a man forget food, sleep, friends, love, everything.” – Nikola Tesla

Nikola Tesla was born in Eastern Europe in what is now Croatia in 1856. From an early age, Tesla demonstrated both genius and obsessive traits, the latter of which it seem to have haunted him throughout his life. We now know that for many individuals, OCD begins in childhood and adolescence. For Tesla, however, at least early on, it appears that his creative drive overshadowed his mental health struggles.

He was known for learning languages quickly, and he reportedly worked through days and nights on only a few hours sleep. As a young student, Tesla challenged reigning theories and technologies, looking for better, more efficient solutions. At the age of 19, he was debating his university professors over perceived design flaws in the direct-current (DC) motors that were being demonstrated in class. Even this early in his life, he was already questioning existing technologies, searching for smarter, more efficient ways of doing things.

He wrote of his attempts to improve DC technology, “I had so much energy to spare. When I undertook the task it was not with a resolve such as men often make. With me it was a sacred vow, a question of life and death. I knew that I would perish if I failed. Now I felt that the battle was won. Back in the deep recesses of the brain was the solution, but I could not yet give it outward expression.”

Only a few years later — still in his early 20s — Tesla began working on a new motor with rotating magnetic fields created by two or more alternating currents. Tesla recognized that at very high voltages, alternating current (AC) would be more efficient, cheaper, and easier to transmit than direct current. As a result, Tesla’s later refinement of AC power technologies would prove to be the key to the long distance transmission of electricity, arguably ushering in the modern age. Persistence, it seems, was a hallmark of Tesla’s personality.

Tesla emigrated to New York City in 1884 with only four cents in his pocket. His first job was at Edison Machine Works with Thomas Edison where he quickly helped solved some of the company’s most difficult problems with direct current (which Edison favored). Unfortunately, this relationship soured early on with Tesla and Edison having a falling out over compensation, resulting in Tesla resigning. This bittersweet theme of great accomplishment and great disappointment appeared to follow Tesla throughout his life.

However, Tesla eventually did patent his AC motors and caught the attention of George Westinghouse (a competitor of Edison). In a key event in the history of electricity, Westinghouse and Tesla demonstrated the safety and reliability of AC power to the American public at the 1893 World Fair in Chicago.

Imagine fighting the demons of a mental illness and yet working with Edison and Westinghouse — two of the most influential figures of the early 20th century. We know that stress exacerbates OCD symptoms. One has to wonder how working closely with these two powerhouses must have affected Tesla. What might Tesla’s life have been like if he lived in an age where more was known about OCD, and mental health in general?

Amazingly, Tesla contributions are not just limited to electricity. His innovations and discoveries have impacted everything from fluorescent lights, X-rays, and wireless communications. For example, although Guglielmo Marconi successfully sent the first trans-Atlantic radio signal from England to Newfoundland, it was done using 17 of Tesla’s patents! The U.S. Supreme Court ultimately upheld Tesla’s intellectual property claims on Marconi’s technology, clarifying Tesla’s role in the invention of the radio—but, sadly, it was not until 1943, after he died. So many of Tesla’s ideas (wireless electricity, for example) were so far ahead of their time, and were not fully appreciated until recent years, in some cases. A look at the list of the 112 patents Tesla was granted throughout his life, shows just how big an impact he truly made on technology.

Throughout Tesla’s life, we see this theme of true brilliance and creativity shadowed by controversy and hardship. And in fact, later in Tesla’s life, it was clear to anyone paying attention that he was struggling with what we now know is severe OCD. And so, it is easy to read the story of Tesla’s life and think that it was an exercise in futility and failure — feelings that many individuals with OCD can identify with. But that is only one part of the story.

Instead of getting lost in the injustice that Tesla endured or the difficulties and pain that he surely experienced toward the end of his life when mental illness outpaced his creativity and innovation, perhaps we should look at his lasting legacy, and be that much more impressed that he accomplished as much as he did in the face of such adversity.

His tenacity, brilliance, and lasting legacy should be an inspiration to us all.

Sources

Brian Clark Howard, “5 Surprising Facts About Nikola Tesla,” National Geographic Daily News, 3 October 2013. http://news.nationalgeographic.com/news/2013/10/131003-nikola-tesla-surprising-facts-statue-museum-science/

Gilbert King, “The Rise and Fall of Nikola Tesla and his Tower,” Smithsonian.com, 4 February 2013. http://www.smithsonianmag.com/history/the-rise-and-fall-of-nikola-tesla-and-his-tower-11074324/

“A New System of Alternate Current Motors and Transformers”  (1888) by Nikola Tesla. http://en.wikisource.org/wiki/A_New_System_of_Alternating_Current_Motors_and_Transformers

Photo: Library of Congress.

I’m Not Ashamed of My OCD

The day a psychiatrist first used the words obsessive compulsive disorder to diagnose me was the start of a journey toward ridding myself of the shame that had weighed on my heart for so many years.  Now, a decade after that original diagnosis, I will unapologetically tell anyone and everyone that I have OCD.  I am not embarrassed, and this is why:

Illness is not shameful.  If I had cancer or diabetes or any other medical illness, I wouldn’t feel ashamed.  Why should I feel any differently just because it’s my brain that is sick instead of my kidneys or liver or pancreas?

I didn’t choose it.  I never invited OCD into my life — I hate it!  I’m not embarrassed of a stranger who crashes a party the way I would be if it were my friend who did so.

It gives me a platform to help others.  Because I’ve experienced the trenches of OCD, I am better able to understand and encourage those in the same war.  It’s an honor to use my own story to help others.

I’m done being ashamed.  OCD made me feel that (and so much more) for twenty years.  I won’t let it have another day.

Talking to Kids About OCD

I had the privilege of visiting with a third-grader named Faith over lunch this past winter. She is the cutest nine-year-old in the world, all eyes and sweet, sweet smile.  Not kidding, you look at this little girl and think, Oh my gosh, a hug from this child could change the world.

Faith is the strongest, bravest nine-year-old I know.  She has obsessive-compulsive disorder, and she is dealing AT NINE with obsessions that buckled me in my twenties.  My heart just breaks when I think about the daily battles she fights, and it makes me hate OCD even more than I already do for the way it could dare to target such innocence and loveliness. Continue reading

Submit Your Proposal to Speak at the Annual OCD Conference!

OCD2014.org ScreenshotWe are now accepting proposals for workshops, evening events, support groups, and the Keynote Address for our 21st Annual OCD Conference to be held in Los Angeles, CA, on July 18-20, 2014.

Our speakers and support group leaders are the backbone of our conference. Help us make this year’s conference our best yet by adding your insight, knowledge, and experience to our program. Whether you are a professional, or someone who wants to share their own personal stories of living with OCD, we invite you to submit your proposal to speak at the next Annual OCD Conference.

For more information about speaking at the 21st Annual OCD Conference, including suggested topics and tips for submitting your proposal, please visit: http://www.ocd2014.org/proposal-tips/. Continue reading