Obsessive Compulsive Disorder: My Last Battle

After being hospitalized twelve times for Bipolar Disorder, I finally found a great pharmacologist and a powerful antipsychotic drug called Clozaril that have kept me out of the hospital for 10 years.

And thanks to the fellowship of a 12-step recovery program, I have abstained from drugs and alcohol for even longer, allowing my medication and my doctor to do their jobs.

But the mental health battle continues to rage on for me with one more diagnosed condition: Obsessive Compulsive Disorder.

Some people think OCD is humorous. People who manifest the illness as “neat freaks” and those who have to line up pencils perfectly on their desk are the butt of jokes.

But OCD is no laughing matter. It is a crippling anxiety disorder that is very hard to treat.

In the past, I took Klonopin for my OCD, but I had to stop because I was unable to take it as prescribed. As my doctor said, asking an addict to take one benzo a day is like asking him or her to have one drink a day.

Because I can’t safely use anti-anxiety medication, I have to address my condition with therapy: specifically, Cognitive Behavioral Therapy.

Since anxiety disorders like OCD are all about patients struggling to control that which they can’t control, the goal of CBT is to teach them that although they are powerless over what happens in the world around them, they do have power over how they interpret and deal with their environment.

One of the hallmarks of CBT is the idea of “exposure”—facing fears one step at a time and walking through them.

My OCD at one time manifested as a fear of getting my period, walking around with a blood stain.

I had to wear maxi pads every day, even when I wasn’t on my period. I could never wear white. And on days I actually had my period, I couldn’t leave the house.

So my therapist came up with an “exposure” exercise. She had me wear a pair of white pants stained with spaghetti sauce. And I had to walk around Grand Central Terminal with her like that.

Several people seemed to want to say something to me, but hesitated. A group of teenagers behind me miraculously refrained from laughing at me.

The idea of exposure is, let the worst fear happen and see that it’s not the end of the world.

Over the years, my OCD has manifested in many different ways. My husband only wishes I was a “neat freak.” In reality, I am a bit of a slob.

At one point, in addition to the fear of bloody pants, I was obsessed with tearing toilet paper off a roll on the perforation. If I accidentally tore it in the middle of a square, this was a bad sign. Something terrible would happen. Then I would sit there on the toilet, hyperventilating with anxiety.

This might sound ridiculous, but the fear produced by this obsession was crippling. I wouldn’t drive or even get in a car on days when I tore the toilet paper incorrectly.

This type of obsession is known as “magical thinking.” Believing that certain signs have meaning and power.

OCD obsessions come and go. Who knows where they come from or why they change?

The toilet paper obsession morphed into a different danger warning I still struggle with today. As I cross a street, I look at the Walk/Don’t Walk sign. If the light changes while I am crossing, it’s a good sign. If it doesn’t, I become panicked.

Perhaps the greatest phobia I have is fear of fire. If I am in a restaurant with a candle on the table, I have to ask to have it removed. When I throw a full ashtray into the trash, I go back and check the garbage for hours afterwards.

And I can’t be anywhere near the stove when it’s on. My husband does all the cooking because I can’t even boil a pot of water. I can’t be in the kitchen when the burners are on.

I also have an intense fear of heights and a deathly fear of flying. I have passed up many opportunities to travel because I couldn’t bring myself to get on a plane.

But when I found out that my best friend from college, Amanda, was dying of brain cancer in Israel, I knew I had to go see her. She was there for me many times when I was in and out of psych wards. Now it was my turn to show up for her.

I bought a plane ticket despite my fear of flying, but had no idea how I was going to be able to get on that plane.

While the travel agent rattled off a list of flight alternatives, I thought, “I must pick the right one. One of these flights will crash. Will it be ironic that I picked the safe flight, or will my friends and family mourn my death and the irony that I picked the doomed plane?”

I went to my therapist with this plan of going to Israel and my fear of getting on the plane, and she had me write a list of my fears about flying.

“It just doesn’t seem right that a big, heavy object can float in the sky,” I read to her from my list.

“Do you understand how electricity works?” she asked.

“No,” I said.

“But you trust that the scientists who invented it knew what they were doing, and when you flip a light switch, you have faith it will turn on,” she said.

Point taken.

“I’m afraid I’ll have a panic attack when the plane takes off,” I read to her.

“The physical response to fear is the same as for excitement,” she told me. “Can you tell yourself, my heart is pounding and I am sweaty because I am excited to see my friend?”

“I am afraid there will be air turbulence,” I read to her.

“There will be,” she said. “Remind yourself it’s the same thing as potholes in the road for a car.”

Then she went over what would happen at the airport step by step, from getting my boarding pass to going through security to waiting at the gate.

On the day of the flight to Israel, I got to the airport four hours early, made it through security, and sat in the international terminal scanning the people waiting with me for strange or suspicious behavior.

As the clock ticked and my flight time grew closer and closer, I told myself, “This might be the last day of my life.”

Following my therapist’s suggestion, I took deep, life-affirming breaths as I boarded the plane.

I paid very close attention to the safety instructions, even as the people around me ignored the announcement and played on their laptops.

When the plane lifted into the air, I did have a panic attack, gripping the armrest and trying to breathe deeply. I told myself, “I am excited to see Amanda.”

There was air turbulence. But as my palms sweated and my blood ran cold from fear, I repeated over and over to myself that this was just like potholes.

I looked at the flight attendants going about their business and told myself, “This is just another day at the office for them. They do this every day.”

And when the plane ride got bumpy or we changed altitude, I looked around at everyone else acting normal like nothing was the matter.

Being on a plane is the ultimate act of powerlessness and turning it over. I had absolutely no control over whether we crashed or not, and all I could do was ask for God’s protection.

“But if it’s your will that I die on this plane, please let me accept that,” I prayed.

Amazingly, I made it through the flight, thanks to my CBT work. But it was 11 hours of hell, stressing over every moment of the flight. I couldn’t sleep because I had to be hyper-vigilant about what was going on around me in case we started to crash. I couldn’t watch a movie on the flight computer because I had to keep focused on the safety of the plane.

But I made it.

Amanda’s sister, Estelle, greeted me at the airport with her husband, carrying a balloon that read, “Welcome to Israel.”

“You are doing a mitzvah,” she told me. “A good deed.” 

But I never questioned whether to come to Israel to see Amanda. It was a no-brainer for me from the moment I learned of her cancer fight.

I felt like I had made it to Tel Aviv for a reason, but I believed in my phobic heart that these would be the last few days of my life. I was convinced that I would die on the return flight.

And then I saw Amanda. Sitting in her wheelchair and diaper, face bloated from steroids, paralyzed from the waist down from tumors pressing on her spine.

And yet with such a sense of dignity and courage.

Amanda was in a rehab facility mostly populated by elderly people, so she was the youngest patient. Her family and doctor wanted to move her to a hospice with other people her age and with her type of diagnosis, but Amanda refused.

It seemed that if she remained in the rehab, she could remain hopeful that she might get better. Walk again.

If she went to a hospice, it would be like giving up. Waiting to die.

And so every day I took a taxi from my hotel in Herzliya to her rehab in Ra’anana. I pushed her wheelchair across a busy street to a park where we sat in the sun, admiring the many cats that milled around the area. We went for coffee at a cafe and to SuperPharm, a drugstore where Amanda liked to go to try on makeup.

Embarrassed about her urine collection bag hanging off her wheelchair, Amanda looked for a bag to put over it, and we finally found a cloth sack with Miss Piggy on it saying, “Are you talking to Moi?”

We played gin rummy, ate lunch together, and talked about her fear of dying, about her hope for survival.

Once, she asked me if I thought she was going to die, and I said, “We’re all going to die.”

“Don’t give me that bullshit!” she snapped. Rightly so.

“I am afraid of you dying,” I said more honestly. I didn’t tell her I was afraid I might die before her on my flight back to New York.

“Look how fat my face is,” she said as we looked in the mirror on the rehab elevator.

“My face is fat too,” I said, since my Bipolar medication makes me gain weight.

“We are the fat face twins!” I said. “It’s good to have fat in your face. It makes you not have wrinkles.”

She liked that.

The five days of my visit flew by, and I wasn’t ready to leave. Afraid I would never see Amanda again, I wanted to stay in Tel Aviv and have time stand still. I wanted to sit in the sun at the park with my friend in her wheelchair forever.

After a tearful goodbye, Amanda’s father drove me to the airport and I made it through security, which was more intense than the security at JFK.

Early again, I sat at the gate calling people back in the states to say goodbye. I wanted to make sure my mom knew I loved her, that my sisters knew. I called my husband and he didn’t answer, so I left him a voicemail.

“He will be so sad he didn’t answer when he gets this message after I die,” I thought.

And then a thought came that really surprised me.

“That’s magical thinking,” I said to myself. “It’s not true.”

And then another thought came.

“If Amanda can face the fear of dying from cancer, I can get on a fucking plane.”

Strangely, I felt calm. I breathed deeply and realized to my surprise that I was no longer afraid.

We boarded, I put my neck pillow on and I fell asleep during the safety instructions. I slept like a baby the whole flight, and woke up rested and calm just as we were landing.

I couldn’t stop thinking about Amanda in the days that followed. I pictured her sitting in her wheelchair with the Miss Piggy bag, her cherubic face beautiful despite the steroids, brave and courageous in her struggle.

And I began to face some of my other fears, in Amanda’s honor.

First I caught myself panicking over a Walk/Don’t Walk sign that didn’t change. But then I pictured Amanda’s face and I told myself, “That’s magical thinking. It’s not true.”

And my Walk/Don’t Walk phobia is loosening its grip on me.

The next step is to face my fear of fire.

I am getting up the courage to turn on the stove, boil a pot of water and make spaghetti.

This might sound silly, but turning on a flame burner is, for me, like climbing Mount Everest.

My beautiful Amanda died a few days after I left Tel Aviv.

I miss her.

But my life goes on. I didn’t die on the plane, after all. And thanks to her bravery, I am finally facing my fears.

Thank you, Amanda.

You fought the good fight.

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