Category Archives: OCD Conference
One Sunday afternoon in February, I was sitting on my couch mulling over the idea of submitting for keynote. I jumped up, set up a camera on a tripod in my office, hit record, and started talking. I’d told pieces of my story a million times, but there was something different about telling it alone to a camera. It made it visceral and it brought it all back in a way I hadn’t experienced since getting well. I laughed. I cried. I had a panic attack. I relived so many moments I’d have preferred to tuck away. It took me 8 hours to record 10 minutes of speaking. I wasn’t obsessing over getting it perfect or saying the right thing. It took me 8 hours because retelling the story alone in a room directly to a camera forced me to bare my soul to an unknown audience describing events in detail I’d never talked about before. It was, in a sense, truly admitting to myself that everything that happened…had actually happened.
After I finished, the sense of relief was palpable. So was the pride. It was probably one of the most uncomfortable things I’d done since my ERP days, but I kept the reason I was doing it front and center the entire time.
While I was at the OCDI, Dr. Michael Jenike told me, “The best thing you can do to treat your OCD is help others.” It seemed so ridiculous at the time. I was the one suffering, in need of help. Wasn’t I supposed to concentrate all my efforts on me? As I found wellness, I began to understand what Dr. Jenike meant. Submitting for and becoming keynote, in my mind, was the ultimate way I could give back. That easily superseded any amount of discomfort I felt and propelled me forward to finish and submit.
That brings us to July 19th, 2014, day of the keynote. Believe it or not, I didn’t write it out. I had an outline but I really wanted to be able to speak from the heart. Being an actor, people assume being on stage in front of 700-800 people would be no big deal. Playing a character and playing yourself are completely different animals. I don’t think what I was about to do really hit me until I walked on stage toward the podium. Time slowed a bit, I looked out at the audience and thought “WHAT THE HECK DID I GET MYSELF IN TO!”
What happened next I can only describe as surreal and unbelievable. There are very few things in my life that actually played out the way I imagined it would. My keynote not only did that, but far exceeded my every expectation. What came after truly solidified for me what I had just done: HUGS! LOTS OF HUGS! (Seriously, a ridiculous amount of hugs.)
After the keynote, it took me two hours to get back up to my room. Mothers, fathers, sufferers, therapists, all telling me how I touched them so profoundly, how one small piece of my story changed the OCD game for them, each walking away with something different.
A college football player walked up to me with tears in his eyes and said, “I feel real hope for the first time since my OCD began.”
A father, whose teenage son had suffered for 3 years told me, “I never knew I was supposed to be involved in his treatment. No one told me until today. You’ve just unlocked, for me, the reason why he keeps getting sick.”
A therapist approached and said “I’d never seen an ERP like that where the therapist kept pushing despite how upset and in pain you were. It really showed she wasn’t being insensitive to you; she was being insensitive to your OCD. That makes so much sense and I have a new perspective on what ERP should look like in my own office now.”
One particular conversation that really got to me was with a young woman in her early twenties. She approached me apprehensively, obviously nervous to share. She said “It was like you were inside my mind translating my thoughts into words I could actually understand. It was like having a conversation with myself where everything, finally after 12 years with OCD, made sense. I know what to do now.” I knew that feeling all to well.
I finally made it back to my hotel room, sat on the floor, and cried myself. The gravity of what I had done began to sink in, and the people’s reactions moved me in a way I had never felt. I was so humbled.
Prior to the keynote, I had always told people I wouldn’t have changed my life, even if I could go back, because of the perspective my GIANT battle with OCD gave me and with wellness, my ability to help others. But I don’t know that I believed that 100%…until the keynote. Without a doubt, sitting in that hotel room, I knew that the universe had a plan for me. That I wasn’t dealt a random hand, I was given an opportunity to turn my pain into someone else’s hope. I don’t know that there’s anything more important in life than that. The amazing thing as OCD sufferers is we all have the ability to do that. I’m not special. I’m simply an example of what can happen when you just say, “Ok, I trust you. I want my life back, so let’s go get it!”
Throughout the conference, there were no OCDs versus non-OCDs, ‘healthy’ professionals versus ‘troubled’ attendants. There were no scholars versus ignorants, problem-solvers versus problem-havers, treating therapists versus treated patients, supporters versus supported. Instead, there was a group of individuals, homogenized by a shared wish; a group of people deeply touched, moved and motivated by the same vision, inspired by hope. Above all, a group of individuals being heard and seen through their unique creative identity. No diagnosis would blur or cloud any I.D. picture (if I may use this metaphor). No symptom was greater than the shyest smile. This was probably one of the things that caught my attention the most. There were more than enough reasons to rightly establish a hierarchy of positions and roles. None of that happened. I remember having discussed this very same thing with Dr. Jeff Szymanski, IOCDF’s executive director, Carly Bourne, director of communications and my dear Stephanie Cogen at a meeting before coming back to Buenos Aires. I’m still so impressed and inspired by their wonderful work and their vision. I’m still processing everything I learned from them. The conference itself has certainly been a life-changing experience.
Just two weeks ago, the 21st Annual OCD Conference was getting underway in Los Angeles. Now we are back in the office and adjusting to reality again. All of the IOCDF staff had an amazing time meeting all of you, hearing your stories, and working to make this a conference you would never forget. On today’s blog, IOCDF executive director, Jeff Szymanski, PhD, reflects on the highlights of this year’s conference, and takes a look at what attendees had to say about the event on Twitter and blogs around the web. – Editor
As the executive director of the IOCDF, boy do I love to hear that! My friend Sean O’Connell asks me each time we talk, “What is the most meaningful thing you’ve done today?” At the conference, every minute of each day feels meaningful. Shala Nicely sums up my hope for every conference goer, every year in a recent blog post on her Aha! Moments blog:
When I attended my first International OCD Foundation conference in 2010, the whole thing was one huge “Aha!” In session after session, I learned one mind-blowing thing after another about OCD and its treatment, and the fact that as a person with OCD, I did NOT have to suffer. (Read the full post here.)
K Oakley shared with us her experience of being a parent at the conference:
I again was amazed at the ease people had sharing their journeys of struggle with this disorder. It definitely is a safe environment where your worst days and fears can be shared without fear of judgment. We met a young man on the shuttle from the airport to the hotel that was attending the conference. My not so shy son struck up a conversation right away, and we immediately became “friends.” It was great seeing him through out the conference, giving each other updates as we went. (Read the full post here.)
As many of you know, the Annual OCD Conference is for individuals with OCD and related disorders, family members and supporters, and professionals. When I ask people about their favorite part of the conference they inevitably remark about how everyone affected by OCD and related disorders comes together on an even playing field to be generous, compassionate and courageous. Our invited Plenary speaker, Dr. Todd Kashdan, had never been to one of our conferences before. Todd is hard to impress, but was immediately struck by the tone of our conference:
But, here is what really got me about this year’s conference: the number of people who returned to the conference not just for a sense of community and an opportunity to learn something new, but to give back. Our 2014 Keynote Speaker, Ethan Smith, was a perfect example of this. The message of his keynote address hit exactly the right tone. He wasn’t up there to just tell his story. He was there to tell his story so that it might make a difference in someone else’s life. His courage and vulnerability during his Keynote was awe-inspiring and we can’t wait to get it posted on our website for even more people to see and be affected by it. Thank you, Ethan!
And we have continued to expand our reach. I was very proud to be involved in an organization that goes the extra step to reach out to underserved populations with the first, full day conference program given completely in Spanish on Saturday, July 19th. A shout out to our Keynote Speaker for this conference, Romina Vitale who wrote a song, My Inspiration, dedicated to the conference, as well as delivering a powerful Keynote address.
Saturday was also the night of our Saturday Night Social, where the entire conference community comes together for dinner, dancing, and more importantly, having fun. IOCDF guest blogger, Alison Dotson, wrote this on her post about the social…
On Saturday night we got dressed up for dinner and the awards ceremony. First up the IOCDF honored advocate extraordinaire Margaret Sisson for her role in spreading awareness in Georgia…. Next up was Minnesota-native comedian Maria Bamford, who received the first annual Illumination Award. Bamford uses her comedy circuit to spread awareness about OCD, telling side-splitting–and sometimes heartbreaking–stories about her life with the disorder. She sang a hilarious little ditty she wrote about her obsessions and compulsions, which had me cracking up every time I thought of it the rest of the night.
Since I’ve loved Bamford for years, and because she’s a fellow Minnesota native, I quietly approached her. I told her I’d hoped to see her show last fall in Minneapolis but that I’d already spent money on a David Sedaris appearance. She nodded and said, “You have got to plan your comedy show budget very carefully.” When Maria went to the dance floor for the first song of the night, IOCDF Communications Director Carly Bourne said, “Alison, go dance with her!” Ack! Let me tell you — I do not dance. But I danced on Saturday! What a blast. I’m sure there’s photographic evidence that I may already be regretting… (Read the full post here.)
For now, however, conference season is over, and Chrissie Hodges summed it up well:
I sit here tonight in front of my computer and I miss my friends from the conference. I miss the unspoken acceptance. I miss the excitement of discovery and the stories of triumph over tragedy. I miss the conversations that come naturally because of a common denominator between 1500 people. And I miss that feeling of being among “my type of people.”
I am the luckiest person in the world to have found the IOCDF and to have been blessed enough to attend a conference that has positively changed countless lives for so many years, including my own. Yes, there is sadness…but it is lined with optimism and confidence that the last few days of my life have changed me positively…and just like the conference time warp happened so quickly–before I know it, I will be right back on a plane heading to Boston for the IOCDF Conference 2015. (Read the full post here.)
I’ll see many of you in Boston. I will be the blur moving through the crowds.