Ocd and Me: My Unconventional Journey Through Obsessive Compulsive Disorder

By Bess Cunningham and David Michael Lyndon Thomas

Bess Cunningham was born, and currently lives, in Brooklyn, New York. Since childhood she has suffered with severe OCD, anxiety and depression. In desperation for relief, Bess spent ten years researching and experimenting. Through her efforts she remains OCD free and is enjoying her life.

• Language: English
• Publisher: PlantaPress
• Release date: Oct 6, 2014
• ISBN: 9780957332812

Book preview

OCD and Me

My Unconventional Journey through Obsessive Compulsive Disorder

Bess Cunningham

First published in 2013 by PlantaPress, Liverpool.

www.plantapress.com

Copyright © PlantaPress 2013

Electronic edition first published by PlantaPress © 2014

All rights reserved. No part of this work may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, without the prior written permission of the publisher.

Bess Cunningham asserts the moral right to be identified as the author of this work.

A catalogue record for this book is available from The British Library, London.

Available in the following formats:

Hardback: ISBN 978-0-9573328-8-1

Paperback: ISBN 978-0-9573328-9-8

E-book ISBN 978-09573328-1-2

Acknowledgements

Thank you to Leigh Ann Wood for your great poems, and to all the OCD sufferers who have shared their experiences with me. I could not have written this without you.

In particular, I would like to thank my husband Jimmy Cunningham, my son Vic Christopher and daughter-in-law Heather LaVine, for unconditional love and support, and my mom, Mary Catanzarita, for your unlimited love, support, and help throughout my life, and for all the great food.

My brother Joe Catanzarita and my cousins Vincent Russo, and Gil – love and thanks for helping me with this book.

Jacqueline and Steve Reddy, and Jenifer Daily, my extended family – thank you for a lifetime of love and support.

John Monaco – thank you for all your help on this book, and for so many countless other things.

Donna Samet – thank you for being a great friend, and for the many things you have done to help me, make me laugh, and for driving me everywhere.

Terry Farnolo – thank you for a lifetime of love, and for your help with PR, love you always.

Wendy Bonnice – thank you for years of advice, wisdom, and all the hours you spent helping with this book, you are a special friend.

Jill Mucha, Eileen Nicolosi, Nicole Delgado, Lana Tengo, Irina Davudova, Teneeka Mcmillen, Josue Alberto, Melo Coniglione, Shari Klein, Robin and Rob Clark, Mary Monaco, Mary Ellen Reddy, Georgia Kontzamanis, Jimmy Kontzamanis, Shannon Addes, Keith and Liz Daily – thank you for reading, working, advice, and all the support and help with this book.

Cliff and Christine Hansen, Paul and Mary Ann Giannone, Billy and Kathy Gorman, Rusty and Ann Bergen, Rene and Robin Rivera, Fred and Joan Turk, Bruce and Cathy Orgera, Ray and Annie Delgado, Billy and Anmarie Cunningham, Richard Cunningham, Ernie and Karen LaVine, Courtney LaVine, Patty Winslow, my family and friends – thanks for all your love and support.

My neighbors Anthony and Christine Loboccetta, Alex and Toni Marie Wishinski – thanks for all your help and for cheerfully decorating my house all these years. Frank and Johann Giordano, and Don and Carol Palmieri – thanks for your years of friendship.

Steven Ilchev – thank you for your friendship and help.

Monti Rock III – thanks for your friendship and true heart.

Oprah Winfrey – thanks for reminding me to remember my spirit and inspiring me to keep writing through the tough times.

Donna Cunningham, author and astrologer – thank you for your great advice, and for giving me the inspiration and confidence to continue writing.

Marie Pianelli, child psychologist – thanks for ensuring technical accuracy, and for your guidance and wisdom.

Dr. Eyal K. Levit – thanks for your great advice, encouragement, and support.

Dr. Jeffrey M. Schwartz – my deepest gratitude to you for your interview, for writing the acknowledgement for this book, and for helping me defeat OCD.

Dr. Gregory Hanna, Dr. Vladimir Coric, and Dr. Albert Robbins – thank you for taking the time to give me great information and interviews, and for helping people overcome OCD. I am forever grateful.

Lindsay Kenny, EFT Master and Life Coach – I am very grateful to you for all the work you did for this book, and for helping me, as well as many others.

David Michael Lyndon Thomas – thank you for the great book cover.

Jessica Troy – thanks for all your help, encouragement, and belief in my book.

John Paine, my editor – thank you for your outstanding editing skills and dedication.

Kathy Hanna, my editor – no words could thank you enough for your editing, faith, and love. I could never have done this without you.

Regina Brooks, Serendipity Literary Agency, N.Y., my agent – I am forever grateful to you for believing in me, and thank you for all the time and effort you have put into my work.

Jennifer M. Smedley, PlantaPress, Liverpool UK, my publisher – thank you so much for this wonderful opportunity to make my message known, and for making this book a reality. It is a joy to work with you, and to know you.

This wouldn’t be complete without mentioning Dominick Catanzarita, my Dad. He gave me the keys to many things, one of which was identifying my OCD. He was a man of great kindness, talent, wisdom, and strength. He lives on in me, and in all who knew him.

Bess Cunningham

Author’s Note

My name is Bess Cunningham and this is my story. I am not a medical professional, however I exist every day with the specter of Obsessive Compulsive Disorder. After many trials, tribulations and debilitating setbacks, I have found ways to defeat it without the use of prescription medication. When reading this book, please remember that most people have some obsessive thoughts and compulsive behaviors, and almost everyone has idiosyncrasies. These behaviors can be seen every day in individuals you and I would rightfully consider normal, but it is when a person’s thoughts and compulsions escalate to the degree of becoming time-consuming and mentally overwhelming that it becomes OCD.

In this book you will gain insight into the mind of the OCD sufferer, and hopefully a greater understanding of this elusive disorder. You will also learn about the wonderful medical advancements on the horizon surrounding the treatment of OCD and related conditions. We are fortunate to live in a time when great strides are being made in the treatment of mental disorders, so the good news is that the future of people with OCD looks bright and promising.

There are many different ways to control Obsessive Compulsive Disorder. Like many chronic medical conditions, it can go into remission and so has to be taken on a day- to-day basis. It is important for every OCD sufferer to know that they are not alone in their suffering, and there is freedom from this seemingly inescapable mental prison.

The poems I have included in the book are by LeighAnn Wood, a fellow OCD sufferer. LeighAnn lives in Indiana, and we met online after I responded to her thread on an OCD message board. Since that day long ago, I have spoken to many OCD sufferers worldwide and have received support as well as enlightenment. It is an incredible feeling to hear others describe things that you have kept hidden.

I am extremely grateful to Leigh Ann Wood, Geri from Texas, and every person who has suffered with OCD: I recognize your strength and the effort it takes to get through every day. I dedicate this book to you…

CONTENTS

Introduction: A Day In the Life

Chapter One: Who Am I? What Does OCD Feel Like?

Chapter Two: The Beginnings of OCD

Chapter Three: Intrusive Thoughts

Chapter Four: Obsessions and Rituals

Chapter Five: The Baggage of OCD

Chapter Six: OCD In Women

Chapter Seven: Contamination

Chapter Eight: Checking, Repeating, and Other Categories

Chapter Nine: Paranormal OCD

Chapter Ten: OCD and Superstition

Chapter Eleven: Depression Sucks

Chapter Twelve: Overwhelmed By OCD

Chapter Thirteen: I Need Help

Chapter Fourteen: My OCD Test

Chapter Fifteen: An Obsessive Community

Chapter Sixteen: On the Horizon

Chapter Seventeen: Therapies and Experiments

Chapter Eighteen: More Discoveries

Chapter Nineteen: Reflexology and EFT

Chapter Twenty: Mind, Body, and Soul

Epilogue

Appendices

Helpful Resources

References by Chapter

Bibliography

Introduction:

A DAY IN THE LIFE

‘It is not the mountain we conquer, but ourselves.’

Edmund Hillary

My cat, Remy, jumped on the bed, nudging me out of a restless slumber. It was Tuesday, my day off, but I had a lot to accomplish. Before I even opened my eyes, my silent prayer ritual had begun; ‘Dear God, please help and excuse all of my offensive thoughts, I don’t mean them!’ My feet hit the floor, and another day in my life with OCD had begun.

While brushing my teeth I had to mentally repeat, ‘I am happy and I am healthy and every cell in my body is in picture-perfect condition,’ several times in a row. The last word had to be synchronized with the last stroke of the brush, and I had to brush in sequence, from right to left. After I finished, it felt as if it was not done perfectly, so I kept repeating the brushing sequence because it just didn’t feel right. After twenty minutes, I was still uncomfortable and it felt as if I would never leave the bathroom. My husband Jim called up to me, as he was getting impatient. I had to tear myself away and, filled with anxiety, I rushed to the car.

The first item on my to-do list was food shopping. While Jim and I were driving to the store, I noticed the license plate of the car in front of us, which included the number ‘313.’ ‘Ugh, I hate that number,’ I was thinking. My dad had passed away at 3:13 a.m., suddenly, after being admitted for a mild heart attack. While I was dealing with this tremendous shock, my granny, who had been doing well in a nursing home, was transferred into Room 313. She died a few weeks later…

My irksome mind instantly flashed back several years to the ‘3/13’ inspection sticker I had seen on the windshield of my son Vic’s first car; a red Buick Riviera. The day he got it he'd come home so excited as he just had it inspected, and it was ready to drive. I didn’t want to ruin the occasion for him, so I pretended to be joyous, but the ‘3/13’ stared out at me and gave me such tremendous anxiety that I was very nervous every time he drove. I will never forget the jolt of fear I felt when I discovered a note by the phone several weeks later. Jim had written that they were having the Riviera towed because Vic swerved and hit a pothole, cracking the CV joint under the right front wheel, narrowly missing a collision with a truck. That incident totally reinforced my 313 obsession. The day that car was fixed, I forced him to get a different inspection sticker.

As a passenger in a car, I just couldn’t help looking at license plates. I was compelled to add the numbers until they formed a single digit, or I had to make sentences with the letters. Once I saw a license plate that read ‘811 YWD,’ and became anxious for weeks after that, because in my mind it said, ‘On August 11, you will die.’ Another death obsession was not what I needed – I already had enough of those. So, there it was in front of us, ‘313,’ and I started to feel trepidation. I looked around for a ‘546’ (which was Dad’s Army regiment number) to negate it. I believed if I found a 546, it should neutralize the 313. ‘Here is a ‘645,’ maybe that would do for now,’ I thought. ‘Oh no, a 133 – damn! That just made the 645 inactive – keep looking!’

We were driving on the Belt Parkway, in Brooklyn, New York. This circuitous highway stretches from Long Island to Manhattan, and winds along the shoreline of the Atlantic Ocean. The landscape is really magnificent in certain places. Besides various colorful boats on the glistening water, you can see the Statue of Liberty, the Verrazano Bridge, the shores of Staten Island and New Jersey, and the very impressive skyline of lower Manhattan, where the twin towers of the World Trade Center used to jut into the sky. People from all over the world marveled at this amazing cityscape. So why was I looking at license plates? But I just couldn’t stop it – nope, nothing, no 546 anywhere – and the anxiety continued to mount.

We arrived at Costco, the warehouse store, overwhelming in its large amplitude of items, and my license plate obsession was temporarily broken. Still, it had left an unsettling creepy feeling. Inside the store, I needed sponges. ‘Here they are,’ I announced, but as I picked them up – WHAM! A horrific image filled my mind – I pictured myself in my kitchen using one of the sponges to clean up blood, and there was blood everywhere! Skittishly, I returned them to the shelf and took another package, but I couldn’t have that thought while I picked up another package because it too would be ‘contaminated.’ I picked up four different packs, still trying to shake the feeling. Meanwhile, Jim was getting antsy, as he had to get to work.

Jim didn’t know that I was experiencing an OCD attack. I did my best to hide it from him, as well as everyone else. By my own deliberation, I kept my anxiety to myself, and believing I was alone in my suffering made my anxiety even worse. I said, ‘Never mind, I think I still have some sponges at home,’ because I didn’t want to tell him what I was really thinking. I was embarrassed.

As we continued shopping, I attempted to resist my ongoing thoughts by devising a clever way around my problem. On the way out, I said casually, ‘You know, since we are here anyway, we might as well get the sponges. Can you run over and get them?’ I didn’t have to go through that ordeal again. He got them, but not without being annoyed, and I couldn’t blame him. While driving home, my anguish continued. I saw a black hearse in the right lane. My mind screamed, ‘Damn! Why did I have to see that?’ I inhaled deeply. In the oncoming lane approached a white stretch limousine… ‘Okay, that can cancel out the hearse, I hope.’ By now the obsessive thoughts were rapidly coming, one after the other. Because I saw that plate with the 313, would another bad thing happen? Did the limo really cancel out the hearse? I pretended to be quietly listening to the radio, but my heart was pounding so hard that my jacket was trembling.

When we arrived home, Jim left for work, and I was left alone to put the groceries away. I turned on the TV and, as I was storing the sponges, a news article came on about breast cancer. ‘Crap! I knew I shouldn’t have bought those sponges, they were no good again!’ I knew my mind would instantly flash to that disturbing news article, every time I used one of those sponges so I pitched them into the closet in disgust. Exhausted by all the drama, I wearily sat down.

Besides the rush of thoughts that would not leave me alone, my phone began ringing. I had to deal with various employees and different issues involving our company, which included several retail stores. I was required to make quick business decisions and project confidence. But I felt overwhelmed, and I had to force myself to focus.

The day hurtled by and suddenly I was running late. I thought I’d never have dinner ready on time. I rushed to pull it together and somehow I managed. Afterward, while cleaning up and washing a dish, though, I experienced another ghastly image involving blood. My inner horror movie scene unfolded all at once. In my mind, I was standing at my sink, washing a glass. The glass broke and a shard of glass pierced the vein in my wrist. Blood started gushing out all over. I pictured my shirt covered in blood; blood spilled on my shoes, on the floor. I didn’t want to upset anyone, so I tried to mop it up. What if the bleeding didn’t stop?

Profuse sweating interrupted my frightening inner vision. But, to make sure my bad thought didn’t come true, I had to re-wash the dish until I didn’t have that thought. By repeating the action I was doing when I had that thought, which was washing the dish, I felt that I could ‘undo’ the thought. When I finally got it ‘right’ – that is, when I washed the dish until I felt comfortable – I felt better. I was stuck at the sink a long time, though, totally exhausted. You’d think that after all of that I’d collapse into an oblivious repose, but that was not the case. That night, as I lay down, my obsessive thoughts would not ebb, and I faced another long, restless night.

Chapter One:

WHO AM I?

‘I have no special talent. I am only passionately curious.’

Albert Einstein

I am not a health care professional, nor do I have a psychology degree. I do, however, possess the wisdom and knowledge of a person who has been coping with Obsessive Compulsive Disorder since childhood. I know it well, from deep inside my bones, in a way that a person who doesn't have it ever could. This doesn’t come from studying books or listening to lectures on the subject; it comes from the inside, from battling OCD for as long as I can remember. Sometimes I felt like Gregor Mendel, researching genetics alone in a secluded abbey in Austria for forty years, completely isolated, with no guarantee of realizing his goals. (1)

‘Progress is not created by contented people.’

The above is a something I heard Oprah Winfrey say on her show many years ago, and is one of the main reasons I was motivated to write this book. I started to write about my OCD in order to unravel the mystery of this very complicated disorder in order to help myself as well as others who fight the debilitating problems it causes. People think that OCD is this one huge problem, but it’s not. It comes out in many different ways. I am a person who endured unwanted, terrifying, anxiety-filled thoughts that compelled me to perform various rituals for relief. OCD caused me to behave in a variety of ways, for example sometimes I had to change my clothing over and over, while another time I had to continuously check to see if my iron was off. OCD is expressed differently in each individual; one person must wash his hands again and again, while another lives in filth because he has to pick up garbage from the street. What stopped me in my tracks doesn’t necessarily stop someone else with OCD and this is why it is extremely confusing and difficult to relate; much of it is hidden.

I’m not what you might think. I am not agoraphobic, nor am I afraid of bridges, tunnels, elevators, or escalators. I travel regularly. I am not a hoarder, orderer, or a washer. I don't fit the criteria that most people associate with an obsessive-compulsive person. I didn’t follow strict, rigid routines, nor did I spend the better part of everyday performing rituals. I can get on a ski lift, dangle hundreds of feet in the air and then ski across difficult terrain without a care. Snakes, reptiles, and spiders never bothered me. However, hearing a cough or sneeze could paralyze me and make some days difficult to endure. I could not dismiss the thought that whoever coughed or sneezed might become very ill, and I had to check for signs of illness.

I have also continuously repeated many actions: re-reading, re-writing, tooth-brushing, dressing, etc., because it just didn’t feel ‘right.’ I have checked door locks and turned off appliances over and over. Even reading the paper could be mentally draining; if I read something bad, I may have had to re-read the entire article a certain number of times in order to protect my family from the terrible event being described. I’m sure it appeared to most people that I was living a normal, ordinary life, however I was just like many other individuals who suffer from OCD; I hid it like a terrible secret, even from my family.

I have also spent countless hours frozen with fear from various obsessions I could not get out of my mind. I knew that these behaviors appeared irrational, and that some people may have perceived me as being crazy or eccentric. Consequently, I agonized silently and alone. Yet, I have never been hospitalized or been on OCD medication. I have a family and a successful business. If you met me, you would have no idea that I’ve suffered with debilitating OCD. I can be depended on, trusted, and can drive anywhere, even through traffic in Manhattan. As a woman in the business world, I can negotiate business deals and sell my merchandise in three different languages. I am also a wife, a mother, a sister, and a daughter. I have somehow managed the incredible challenge of keeping everybody and everything balanced. As a working mom, I’ve had to juggle school, shopping, cooking, and career whilst remaining emotionally stable.

It is hard for many people to just function normally, anyway. I once read an article about a typical morning in the lives of several different women. One was a single teacher who was training for a marathon before rushing to work. She didn’t have time to shave her legs and she didn’t care, even though she was wearing shorts. Then there was the newlywed, who slept till the last possible minute, and not having time for a shower, sprayed perfume all over herself instead, arriving ten minutes late for work. Another was a single woman who drank a lot and woke up in the bed of a stranger, starting her day with Advil and regret. She made it to work, but the people there knew because she had the same clothes on as yesterday. The stay-at-home mom and the teacher had very busy, fixed routines, and were never idle. Just about all of them were tired, rushed and harried. And they didn’t have a mental disorder. If it was difficult for them to get through the day, can you imagine how it was for me, or other people with OCD?

Any person you pass on the street could have OCD. They might be your close friend or family member, in your religious organization, on your school board, interacting with your children, or working beside you as a business colleague. Many with OCD keep it as a terrible secret because of the stigma and bad reputation it carries – they might not be trusted with children, finances, or other things of great importance if they were thought of as crazy. But they are not crazy, in fact many possess superior intelligence. They are mainly just misunderstood. Because of the secretive nature of the problem, a person with OCD can be in a room full of people, yet feel totally alone. While other people are chatting pleasantly, he or she may be thinking all kinds of horrendous thoughts and be performing a variety of rituals to offset them.

Even though I had been suffering with it for most of my life, I didn’t know what Obsessive Compulsive Disorder really was. I had heard endless definitions of OCD, including ‘unwanted repetitious obsessions that causes the sufferer to perform compulsions for relief.’ However, what exactly does this mean? What is really going on here, and why is it so difficult to explain? How can I tell you what this is like? How can I impart to you what was going on inside me? You may have seen me every day, and most of you had no idea what I had been living with. In order to understand the bizarre behaviors associated with OCD, one must first comprehend the principles behind it.

The media usually depicts people with OCD as bizarre or humorous individuals with extreme washing and contamination rituals, and this has become the generalized view. Other common, well known behaviors are checking, repeating, or hoarding rituals. Nevertheless, there are other manifestations of OCD that make it hard to understand. Generally, they take the form of; you have to, you can't, you must get it perfect, and you must make sure. This process can spiral out in infinite directions.

OCD causes some people to retrace their driving route over and over to see if they ran over someone, while others have to wash two hundred times a day to alleviate anxiety. My OCD did not manifest like that, but I know full well the anxiety that causes those behaviors. Here is an example that I learned about after the fact:

‘I was at a party with three other friends, and three out of the four of us had OCD. As we walked into the room, my friend with cleanliness obsessions saw a room full of people with dirty hands. The thought of having to touch everyone was so disturbing that he started to sweat. He looked around for the bathroom because he knew he must wash soon! My other friend suffered from intrusive thoughts of death and fear of colors. She noticed that most of the guests were wearing black, and she started to panic. She was pretending to be at ease while reciting a mental prayer for safety because she feared impending doom. Black and red clothing were taboo for her.

Being sensitive to numbers, I noticed the number of the apartment and experienced extreme anxiety because it was a ‘bad’ number. I was compelled to add a series of numbers in my head to offset my anxiety. Our friend without OCD didn’t have a clue that we were experiencing these bizarre thoughts. He didn't even realize we have a disorder. We other three all thought we were suffering alone, not