“Ma’am, I need you to tell me everything. Start from the beginning,” Dr. Wahlia said. Seema sat with a blank stare on her face. She felt numb and her thoughts were frozen. Her son Varun held her hand as her husband, Sunil tried to fight back tears.
Seema took a deep breath and began telling the story:
We were so surprised when Ayesha was born. Both my and Sunil families have so many boys, and we already had Varun. We were sure the second one would be a boy. But she came out with strong lungs and we were ecstatic to be bringing home a baby girl.
She had some trouble adjusting at first. It took her some time to learn how to nurse but she eventually figured it out. It took her over 1 year to finally have a regular sleeping schedule where she would sleep through the night. But the pediatrician was not concerned about that, saying that some babies just take longer to settle into a routine.
Ayesha was such a creative child. By the age of 2 or 3 she was coming up with very interesting games to play and would make Varun get into character and play with her. Varun is a quieter child and would go along with anything. Ayesha was very domineering and even with a 4 year age difference, she was able to get Varun to do almost anything.
She always knew what she wanted and was always determined to get it, no matter what it was. When she couldn’t crawl and she saw a toy out of her reach, she would not stop calling out for it until she got it. As she got older, she would know exactly what she wanted to wear to dinner parties, events or even to school. She would do anything to make sure she could wear what she wanted to wear. When her mind was made up, we knew we had to get out of her way. It was such a great quality to have, we thought. It made her such a strong student in school because if she wanted an A, she would do everything to make sure she got an A.
“Sir, can you tell me a little about Ayesha too?” asked Dr. Wahlia to Sunil.
We just didn’t see anything wrong but looking back now, I see what the problems were. Even at the age of 4 or 5, she was such a neat and tidy child. With Varun, we were always nagging him to put his toys away. Ayesha would do it without ever being told. Each toy had its place, her clothes were organized in a specific order that no one could change. Seema and I thought we were the luckiest parents in the world.
She did some other odd things, but at the time they seemed like something any child would do. We thought it was just another game of hers. She needed to wear shoes with laces and she had to have them pulled really tight, tighter than I would think was comfortable. Without that tightness, she would not walk with them. This started when she was about 6 and never really stopped.
One night, when she was about 8 years old, I went to tuck her in at night and she said that she had been having bad thoughts. When I asked her what kind, she said that kept imagining something hurting me, my wife or Varun. It was dark, we were having a terrible storm and the wind was howling. I thought she was just scared. So I told her to count to 10 and by then, the thoughts will go away.
She really liked that trick and over the years used it all the time. She would count to 10 other times of the day and we thought she had learned very early on how to manage her anger. If her brother upset her, she would count to 10. But then we noticed that she would count even if she was not visibly upset. And if we had to hurry her out the door or something, she would refuse to budge until she got to 10. We just thought she was being thorough. This is the same girl who won’t let herself eat dinner until she finishes her homework.
All of these things are just normal to being a child right? That’s what we thought at least.
“Varun, tell me about growing up with your sister,” Dr. Wahlia asked.
It was fine. She was always way more intense than me it seemed like. And I know I’m really laid back so we just figured it was a normal difference between siblings. But she would do weird things that she tried to keep a secret. One time I found her counting her stuffed animals when she was maybe 10 years old. And she just kept counting and counting them over and over. When she saw that I was watching she got so scared that she slammed the door in my face, breaking my toe, which she felt so bad about.
That’s the other thing. She always felt bad about things. Like she felt guilty. If you told her she did something wrong, or if I told her she hurt my feelings when she did or said something, she would feel so guilty about it. It even happened if she forgot to complete a homework assignment or was late to a group project meeting for school. She just couldn’t shake off the guilt. She apologized constantly and just had a really hard time forgiving herself. Even a few days later, she would still be thinking about it. Sometimes she tried to make a joke at her own expense about how clumsy she is that she broke my toe. But other times she would just feel really upset with herself and she couldn’t let it go.
I think high school was the worst for her. The stress of going to such a huge school, we had about 3000 kids at our high school, plus keeping up with all of the classes and making sure her grades were as high as she wanted them to be, it just really got to her. She would count all the time like our dad taught her to. She got really obsessed with erasing things when she made a mistake so that you couldn’t see any of the original pencil marks. Sometimes she would erase so hard that the paper would tear and then she’d feel really guilty for wasting a paper or that she had to start that page over again.
As she got older and started thinking about college, the stress from that made her even more uptight. She’d have to check to see if the lights were turned off about 3 times before she could leave the house. We just thought that she was so stressed she kept forgetting that she had already checked. But she and I were close growing up so I knew that something wasn’t right.
She hated being teased. It was like she couldn’t take a joke, even if it was benign. Most of the time those jokes she would take seriously and feel bad. She’d laugh in the moment but I could tell she would feel bad. And then for days she would wonder if she was doing something wrong that made the other person tease her. It was nonstop. She was such a perfectionist.
I just didn’t realize it was so much worse than I knew.
“Tell me about what happened tonight,” Dr. Wahlia said carefully, leaving it open for all of them to answer. Seema’s eyes welled up with tears and Sunil immediately comforted her. Varun tried to muster up some courage to talk about one of the worst things he had ever been through.
I got a call from Ayesha’s roommate, Megan. She sounded hysterical and all I heard were the words Ayesha, blood and 911. My parents were at a dinner party so she couldn’t reach them. I finally got the name of the hospital out of her and raced over there, trying to call my parents the whole time. She goes to school 3 hours away from home so it took me a long time to get here, the whole while running all kinds of scenarios through my mind. Maybe she’d gotten hurt, maybe mugged if she was walking late on her university campus. I never imagined this though.
I saw Megan in the waiting room and she handed me a note. I wanted to speak to the doctors but they weren’t allowing any visitors in Ayesha’s room yet as she was still in critical condition. The note was about 3-4 pages long and just described what a tortured life she had lived up until now.
In the note, Ayesha described some things we already knew but so many more things none of us knew about. Of course she said she needed to count constantly and that she couldn’t leave the house or her dorm without checking the lights three times. She also said that living with a roommate was impossible because she would always change the order of things that Ayesha had put them in. Seeing one pencil out of order would upset Ayesha to no end. After she put it back in its place, her note stated that she would sit on her bed and rock 52 times while counting each rock out loud. Then she would check the lights 3 times, leave the dorm room, go to the bathroom and wash her hands 3 times. And only after that, would she start to feel better.
She said that so many times images would just pop up in her head of something horrible happening to me, my dad or my mom. Sometimes, she said, the image would be of her hurting us even though she never actually wanted to hurt us.
The worst part was when she wrote that she didn’t tell us any of this because she was so worried about how we’d react. She was so embarrassed about it that she did everything she could to hide it. But it had started to become too much since high school. She knew there was something wrong with her and she felt she had absolutely no control in stopping it. She said she cried as she rocked and counted because as she was doing it she knew she shouldn’t.
Varun paused wondering if he needed to tell the rest. Dr. Wahlia’s silence indicated that she needed to hear the entire story.
She slit herself 12 times with a pair of scissors. When Megan found her, she was in a pool of blood and unconscious. She said she didn’t want to live anymore because it felt like something was eating her from the inside out. She wasn’t happy and she had no idea what to do to make herself happy.
She was such a great kid. So smart, so organized, always knowing what she wanted, having lots of friends. How did she hide something so huge from so many people?
Seema burst into tears as Sunil held her tight. Varun felt tears running down his face as he tried to wrap his head around the enormity of the situation.
The doctor expressed her compassion and sympathy for the family and proceeded to explain, “Ayesha has obsessive-compulsive disorder, OCD. It is a type of anxiety disorder.” Dr. Wahlia spoke slowly so that the family could grasp everything she was saying.
“Have you ever had the feeling when you walked away from your car in the parking lot, that you might not have locked it?” The family nodded. “Sometimes you can convince yourself that you did and you can continue on with your activities. But there are times when you have to go back and check to ease your anxiety, right? That is an example of a compulsion and what Ayesha feels constantly. We all do these little things once in a while: go back and check things, wash our hands one extra time if we touched something particularly dirty, keep our desk exceptionally tidy. The difference between that and OCD is that people with OCD don’t usually have that experience of turning off the behavior. Their compulsions take up a significant portion of their day and affect their lives tremendously.
“Most people with OCD hide their symptoms because they are ashamed of what they’re going through and are worried about what other people might say because they themselves know something is wrong. OCD has a biological basis. People with OCD have a brain structure that does not activate as often to inhibit behavior. That is why Ayesha couldn’t control herself to stop after the first or second time she checked the light or why shouldn’t stop counting to leave the house for school. Please don’t blame yourselves or feel responsible for creating this situation though.
“The thoughts that would intrude her mind about you all getting hurt or her ruminations on mistakes she made are examples of obsessions and her behaviors of checking the lights or rocking are examples of compulsions. Cognitive behavioral therapy in addition to certain types of medication can help manage the symptoms of OCD to live a long and happy life. Once Ayesha comes out of the coma, and the doctors have a chance to assess her condition, we can talk more in detail about treatment options.”
OCD affects over 12 million Indians and about 2 million people in Pakistan and Bangladesh. Many times symptoms present themselves as early as 3-5 years of age, although some people may develop symptoms well into adulthood. One of the leading causes of death in patients with OCD is suicide, with as many as 10% of patients with OCD attempting suicide in adolescence or adulthood.
Because of the stigma around mental health, OCD diagnosis is often delayed at least 9 years after the first symptoms appear. Learn more about Obsessive-Compulsive Disorder and contact a mental health professional as soon as you notice the signs. People with OCD can live happy, healthy lives but accurate, timely treatment is crucial.
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