The IOCDF Annual Conference–A Changed Life

“Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure, or nothing.” Helen Keller

Dr. Grayson used this quote prior to the camping trip. I’ve never heard the full thing, always just the last line. But it’s so appropriate for those of us with OCD.

After the camping trip, I was weirdly excited about the next day’s contamination session. I was feeling more confident than I had felt in years. I had no idea what to expect, except that I knew Dr. Grayson would push my OCD boundaries.

Boy, did he. He gave those of us with contamination OCD a worksheet. This worksheet was called an E&RP (exposure and response prevention) motivator. On this first side, we were supposed to list the things we’d lost out on because of OCD. Rather than having us fill out the worksheet there, he asked us to share specific stories with each other. I didn’t get a chance to share mine, but I had a few.

I missed out on my husband’s surprise 30th birthday party. I was there physically, but my mind was consumed with thoughts of contamination. I don’t know how many times I abandoned the party in favor of the bathroom sink that night. I washed my hands so many times. I missed time with my friends. I missed my husband’s happiness. I barely remember who came. All I remember is the anxiety I felt.

I missed my own birthday less than a month later. My in-laws were kind enough to invite my husband and me and any friends who could make it to their home for the weekend for festivities. Parts of that weekend I remember as being wonderful. My father-in-law made me a special birthday dinner, and we sat by the fire, and we played games and drank good champagne and ate cake. There were some beautiful moments. But sadly, that weekend was full of terrible moments, most of which only my husband has known about. My contamination issues were so bad that I literally couldn’t shower on my own. I stayed in the bedroom most of the time, paralyzed by fear. And then I became so depressed because I felt like such a failure to all the people around me that I contemplated overdosing. My husband stopped me. I don’t think I would have done it. I just needed someone to understand how badly I was hurting. Do you know what it’s like to not even be able to function?

I put on a good show. Most of the time, you wouldn’t know I was struggling. But there is a war in my brain.

I’ve missed much more. Trips with friends. Times with my mom. Activities in New York City. So much of my life, I’ve given to this damn disorder.

On the other side of the worksheet, we were supposed to list how we had hurt others with our OCD. My husband immediately came to mind. I’ve engaged him in so many rituals and used him to avoid so much. I’m really blessed by his love. I know not everyone would stick around for this. I’ve yelled, I’ve screamed, I’ve cried. I’ve been shaky and nervous and unable to live in the moment. As Dr. Grayson talked to one of the others in the group, he brought up the idea that we were putting our OCD first.

I had never thought of my OCD as something outside myself that I could prioritize. I just thought of it as part of me, something everyone would just have to accept. Thinking of it as something outside me totally changed my perception. He was right. I’ve putting my OCD first in everything, including my relationship. I even did that with my ex. OCD has been number one for such a long time. It’s so hard to not give in to the compulsions to ease the anxiety. Anxiety hurts. Like physically hurts. I can feel it tightening my chest and pulling me in and making me sick and  dragging me down until I can’t take it. I miss everything special when I feel this way, which totally goes against my nature. I believe so strongly in living in the moment and treasuring every day. OCD has kept me from that.

I cried. I didn’t share my story there, but I cried, because I knew what I had lost. And I knew it was time to stop.

Those of us with contamination OCD went to the front of the room. We sat on the floor. We rubbed our hands on the floor then licked them. We ate Tic Tacs that had been spilled on the floor. And then, the ultimate: he offered up pieces of ABC (already been chewed) gum.

Yep, sounds gross. But he brought up a good point. He asked who had French kissed someone they barely knew or didn’t know in college. Yeah, that happened to me. He pointed out that chewing a piece of gum isn’t that different. And it’s really not. So I took the gum. And I chewed that gum until I was in my hotel room, when I gave it up only because I hate chewing that long.

Afterward, he answered questions. I heard him tell people to take showers wrong, to do things wrong on purpose. If it feels wrong, you’re doing right. And it all just clicked for me.

The next morning, I got the in the shower without washing my hands. I washed everything once and was done in about 10 minutes. I did not wash my hands before dressing. I did not wash my hands after dressing. I did not wash my hands after doing my hair or putting on jewelry or brushing my teeth. On top of that, each time I have washed my hands, it’s been one time. It’s a freaking struggle. I leave the bathroom, and obsessive thoughts start creeping in, trying to convince me I need to wash more. I haven’t been asking for reassurance from my husband, and goodness gracious, have I wanted to.

But I feel

FREE

STRONG

HAPPY

LIKE I’M THE PRIORITY

WELL

INSPIRED

MOTIVATED

IN CONTROL.

Every day is a struggle. But I am not alone. I heard the fears of others at that conference. I heard my own fears. And I heard hope and recovery and happiness and freedom. And now more than ever, I feel those things are achievable. I didn’t think two days could have that effect on my contamination OCD; my issues run deep. But these workshops taught me so much. We’re all in it together, and we can do it. People care. People want me to get better for me. And I can be free and happy and live life to the fullest.

I feel like everything has changed. I’m not saying this will be easy. It’s going to be freaking hard. Every day I will fight. But I will fight, because I know I can do it. And I know there is something beautiful and wonderful around the corner. And I know I can use this to help others.

The IOCDF Annual Conference–A Camping Trip

I have struggled with contamination OCD since I was a kid. But it really started to get bad about 10 years ago, when I was a senior in high school. A mix of too many activities, more difficult classes, figuring out that whole college business, a new boyfriend, and my grandfather losing his battle with prostate cancer led me to start washing my hands multiple times. Over the next few years, it got worse and worse. I still remember a picture of my best friend Amy and me, all dressed up, about to attend our sorority social. If you look at the picture, you see my hands are angry red. It’s as though I wore gloves with an intense irritant inside. That was one of the first times I realized this was becoming a big problem.

In the past year, I’ve made a lot of progress. I rarely, if ever, use sanitizer. But I still struggle with washing my hands too much.

Example 1: I’ve just finished using the restroom. I call for my husband to come “monitor” me, which means he helps me keep track of the number of times I wash and reminds I did wash when I leave the room. (I actually started that with the intention of him telling me to stop when I didn’t want to so I’d have to sit with the anxiety.) I wash my hands for 15 seconds. I wash my left arm almost to my elbow for 15 seconds. I wash my right arm to almost my elbow for 15 seconds. Sometimes the seconds extend to 20, and/or I repeat the counting of seconds. Rinse. Repeat. Rinse. Repeat whole process if still unsure. Otherwise, wash just hands for 15 seconds or more. Rinse. Carefully turn off water. Dry. Pat towel 3-5 times. Clasp hands. Walk out of bathroom. Ask repeatedly if I actually washed and didn’t’ touch anything dirty.

Example 2: A typical morning routine. Change out of PJs. Wash hands. Take shower. Shower lasts 15-30 minutes. Everything is washed 2-3 times, or until it feels right. Leave shower. Dry. Wash hands. Get dressed. Wash hands. Fix hair and put on jewelry. Wash hands. Brush teeth. Wash hands. Do anything else. Wash hands.

The day I headed to Atlanta for the IOCDF conference, I was still doing all of these things. Even on the first day of the conference, I was still doing these things. Until the virtual camping trip.

The virtual camping trip is led by Dr. Jonathan Grayson. If you’re interested to learn more about him and his techniques, you can Google him. He appeared on Oprah and in an article in People magazine. I’d never heard of Dr. Grayson before. I had no idea what to expect on the camping trip. I just got the sense that we would go around the city and do some exposure therapy.

As I was sitting in the conference room waiting for the session to start, I overheard people saying things like, “He makes us touch toilets and then use our hands to eat.” What? Every horrible exposure thing I’d ever heard of popped to mind. I was petrified. It took everything in me to not get up and leave.

When Dr. Grayson started speaking, though, I was captivated. He’s this incredible mix of frank, encouraging, tough, and caring. He knows just what to say to get right inside the heart of you. Well, at least for me. He described the origin of the camping trip. He talked about how our goal with treatment is to accept uncertainty. There is no such thing as certainty. Nothing is ever certain. Certain is a feeling, not a fact.

We all headed outside to start exposure therapy. One of the first things he asked for was our Purell. I had my “emergency” bottle in my purse. I didn’t want to give it up. It’s like a safety blanket. Never mind that several months ago I got rid of it and stopped using it. I was back on it part time, and I didn’t want to stop. I wasn’t going to give it up. But then no one was. And I felt this conviction, like we’re all out here doing this, and I should really participate. So I gave it up, and people clapped for me. I almost cried. I can’t even describe how wonderful it felt to know that everyone there knew how hard that was for me, even though they didn’t know me, and they were proud of me for that step.

When Dr. Grayson asked if anyone had violent thoughts, I hesitated. Most people don’t know this, as it’s not a part of my OCD I like to talk about, but I’ve always struggled with violent thoughts. They come out of nowhere. I can be standing next to someone and suddenly thinking about some horribly violent way to kill them. I have no actual desire to kill anyone, but my mind creates this scary, vivid picture that causes me to question who I really am. I can’t watch scary movies because the images replay in my head, like there’s a broken VCR that will only show me the most horrific images. I remember watching Ghost Ship with my boyfriend’s family in high school. I was there when it was picked out. I wanted to scream, “No! Please let’s watch anything else. I can’t deal with scary.” But I didn’t feel I had that option because I didn’t want to be “that person.” You know, “that person” that always needs things a certain way and ruins everyone’s fun. But I should have said something. To this day, images from the opening scene haunt me. All I have to do is see the title, and the images start replaying over and over in my head. I start to feel nauseated.

I’ve tried to hide it. I just say, “My family always watched family movies.” And truthfully, we did. But I started seeing scary movies at an early age too, and I’ve never been able to handle it. I still see a nightmare I had of my parents killing me after I watched It as vividly as the night I first dreamed it; I was five years old.

So I have violent thoughts. I don’t like to touch sharp things, or be near anything that can harm someone, because my mind will conjure up these images of me doing something terrible. I’m like a mouse; I could never actually hurt anyone. But my mind does its best to convince I can and will.

So Dr. Grayson asked, and I came forward. I had to carry a knife through a gauntlet of people screaming and moaning as though I were killing them. It’s one of the scariest things I’ve ever done. When people are screaming at me, I panic. My heart was racing as I went through the gauntlet. But I made it out. I made it. And after a bit, the intense anxiety I had felt began to subside. I think everything became easier after that.

We shook hands with homeless people. And most significant for me, for our final activity of the night, we went into the bathrooms. Our task was to touch the toilet seat then eat a Tic Tac. Now, I’ve cleaned my toilet at home before, but while wearing gloves, and washing my hands a billion times after. I knew this was coming and I was still terrified. I asked the helper several times, “What part of the toilet do I have to touch?” She told me anywhere on the seat. I faced the toilet. I looked at the seat. It was relatively clean, but there were some splashes of liquid on it. Who knows what they actually were. I put my left hand down on the seat. I don’t know how I managed it, but I did. And then I took my Tic Tac with my left hand, popped it in my mouth, and forced myself to eat it.

I realize to most of you, this sounds like the grossest thing you’ve ever heard of. You might think I’m insane, or the doc is insane, or all of us are insane. But for OCD people, this is critical to getting better. We think in extremes, so acting in extremes helps up to recognize that no bad will actually come like we thought it would. For me, this was the start of a breakthrough.

I made myself wait until I got back to my hotel room before I washed my hands, and I only did it then because I had to use the restroom. After that, it became easier to tell myself to only wash one time. I could tell myself, “Hey, you touched a toilet and ate. It’s not the end of the world if you don’t wash your hands that second, third, fourth, fifth time. you’re pretty good with one.” It was the start of a revolution in me, that became even stronger when I attended Dr. Grayson’s contamination session the following day.

Watch for that story in my next post!