I was 16 the first time I experienced a panic attack. I was standing by the stairs of my parents’ New Jersey townhouse, looking at myself in the mirror, admiring the way my new turquoise blue salwar kameez draped down in graceful folds. Suddenly the room started spinning and I found myself gripping the banister to keep from tumbling to the floor. I slid down to sit on the steps just as a wave of inexplicable fear, so intense I could feel the bile rise up in my throat, hit me and I found myself unable to breathe. “I’m having a heart attack,” I thought. I could feel the beads of perspiration began to drip down my forehead and my eyes well up with hot tears, making the eyeliner I had so painstakingly applied, run into dark pools at the inner corners of my eyes.
It must have lasted a minute at the most and when it was over, I shakily walked to the bathroom and composed myself without anyone knowing. I was able to get in the car, laugh at a dinner party, make small talk with friends, all the while pretending that I hadn’t just had an episode of some kind. I was able to conceal my emotional aberrations and pretend that I was normal. It’s what I was trained to do as a Pakistani and as a Muslim. It’s what I had been doing my whole life as the daughter of a schizophrenic.
My father was one of the greatest men I’ve ever known. He had a smile like lightning and a contagious laugh that drew you in until you could barely breathe from laughing yourself. When he sang, his voice deep and clear, the world stopped and his voice became the melody in our heads. When I’m quiet, I can almost still hear him singing in the deepest crevices of my mind. And his ambition was never squelched, lighting a fire in all three of his children, pushing us to reach beyond any self-imposed limitations towards success. That’s what he was like when he was well. That was the image we tried to maintain to the world for decades.
And then there was the other side. The scary Daddy. The quiet man who would sit in the dark, smoking cigarette after cigarette, his ear cocked to the side as if he could hear a song on a frequency none of us could attune to. The man who filled one notebook after another with inventions and diagrams and wrote letters in cramped, tiny handwriting to patent offices and government officials – letters that would go unanswered, if they were mailed at all. This was the image we tried to cloak from the world for decades.
Mental illness is a taboo like no other in our community. It invokes fear, shame, ridicule and the ever-present judgment of some type of religious failing on the part of the sufferer and his or her family. Surely, sister, if you pray a little harder, give a little more sadqa, fast a little longer, the illness will clear. And when those simple missives inevitably fail to yield results, the whispers begin. Surely there are dark spirits at work, an evil djinn that has attached itself to the person, best to steer clear of the whole family.
Who cares if 43.8 million people in the U.S – or one in five adults – experience some form of mental illness in a given year? What difference does it make that nearly a quarter of those people suffer it to such a level that it substantially interferes with their lives?
I had read the statistics from the National Alliance on Mental Illness. I knew that 1.1 million adults live with schizophrenia, just like my father did. And given the fact that there are roughly 3.4 million Muslims in the U.S., I knew the math had to mean that a significant number of Muslims were somehow touched by the specter of mental illness as well.
Rationally, I understood these facts, but these bleak numbers on paper never translated to real life examples. I didn’t know anyone else like my family because growing up, we, like so many other Pakistani families, lived under the constant threat of judgment from within our own community. We were paralyzed by the most powerful and insidious words ever circulated: “What will people say?” So, we hid behind smiles and lies, carefully weaving a tapestry of half-truths and excuses to concoct an innocuous image of the typical struggling immigrant Pakistani family that our community would easily accept.
We chatted at dinner parties and danced at weddings amid hundreds of people, and yet we felt completely isolated. It didn’t help that people would sometimes avoid us at gatherings after hearing idle gossip. It didn’t feel good when well-meaning people, somewhat aware of our struggles, would advise my mother not to disclose too much or her daughters wouldn’t receive any good rishtas (proposals).
So, we kept quiet, resigning ourselves to our solitude in this journey. We prayed and we wondered what we had done to anger God enough to deserve the affliction my father struggled with in the dark. We swallowed the shame of his illness as some kind of divine punishment and accepted that we were truly alone.
It took me almost 40 years to shake myself of the shame and misplaced self-loathing. Only in recent years have I begun to understand my father’s schizophrenia and recognize the strength and dignity with which he conducted himself in the midst of his illness. Last year, after much deliberation with my family and seven years after my father’s death, I chose to share the story of my family’s struggle with schizophrenia. I felt compelled to use my platform as a female Muslim journalist to help my community move past the stigma that comes with mental illness.
The morning my article went live, I went into the bathroom and threw up. I sat there on the cold tiles in the throes of one of the worst panic attacks I’d had in years. I later found out my mother cried when she read the article and took to her room, convinced that all her friends and acquaintances would shun our family. Meanwhile, I braced for the onslaught of hate and ridicule to come my way.
But it never came. Instead, I received emails and social media messages from so many other Muslim-Americans telling me their stories. One e-mail, in particular, hit me hard.
“First of all, may Allah reward you for your bravery with sharing your story,” the woman named Naureen wrote. “It’s still very difficult for me to talk about my mother’s illness, after years of hiding it from the world, the shame, the stigma.”
She went on to describe her beautiful mother and how schizophrenia slowly took over their lives. It was a story I knew well because it mirrored mine in so many ways. She ended the piece by saying that my story had inspired her to move forward with an idea for an organization that she and her sisters had long wanted to create, in hopes of honoring their mother and helping other Muslim families struggling with mental illness. When Naureen messaged me later to tell me that SEEMA – Support Embrace Empower Mental Health Awareness – was born and that she had connected with the disability non-profit Muhsen, I sat back and cried.
A lot of the messages made me cry. As they recalled the pain of watching their families suffer, unable, in many cases, to help their loved ones, I understood their pain. But I also laughed with them as they told me creative ways in which they hid their struggles from the community. And as I read their stories, I saw one common theme in every message: “I thought we were all alone.”
We are not alone. I have severe anxiety, something I hid from the world for years after my first panic attack at 16. My father had schizophrenia. I am privileged to know kind and brilliant Muslim men and women who handle the ups and downs of depression and bipolar disorder every single day with grace and fortitude. We’re a part of a fraternity that none of us would have willingly chosen, but one that has to be accepted and embraced by the Muslim community at large. And given the avalanche of responses I received to my story, I’m hopeful that our families can finally step out of the shadows.
Shaheen Pasha is an educator and journalist who joined the faculty at UMass in January 2013. She has worked at CNNMoney.com, the “Wall Street Journal” and CNBC Asia, among other news outlets. Her areas of focus include international journalism, Islam and religion, business reporting, and mass incarceration issues.