July 09, 2013
In December 2011, I launched a global non-profit organization called The Siwe Project. It was named for Siwe Monsanto, the 15 year-old daughter of a good friend. I’d known Siwe since she was 4 years old so I was aware of her ups and downs. However, it still came as a shock when in June of 2011, she took her own life. As a black woman, I understood the stigmas and shame that came with mental illness. I understand that all cultures have issues dealing with and understanding mental illness, but I also know that the global black community has specific ways of dealing with illness, in that, we rarely deal with it. Siwe was lucky to have an amazing mother who dedicated her life to helping her but many aren’t so fortunate. The Siwe Project was born out of a need to help people like Siwe have a place to begin the conversation and tell their own stories. My reasons for taking on this endeavor were also selfish; I needed a place to feel a sense of community as I managed my own illness. I was diagnosed with bipolar II disorder at the age of 27. I’d struggled for most of my life trying to understand who I was and why I couldn’t ever seem to get it together. I began to notice that there was something “different” when I was 8 years old.
I didn’t fully understand it at that age. I just knew that there was this uneasiness that followed me around. I just knew that I cried sometimes but wasn’t sure why. I just knew that I couldn’t sleep some nights. I’d get dizzy and lightheaded and my stomach would rage out of control. And then there was the sadness; that inexplicable melancholy that sat on my chest from time to time. I’d be fine and then out of nowhere the tears would start.
I was constantly heartbroken by the world. In the third grade, the Space Shuttle Challenger exploded. We were in Mrs. Zeroski’s class watching it as it happened. I remember the entire class burst into tears, even our teacher was openly weeping. I cried too but something else happened, something broke and I couldn’t drag myself out of the sadness. Days, weeks, months went by and I was still broken. I stayed up at night obsessed with how I could have stopped it; even wondering if I had caused it somehow. Was it that spelling bee that I fumbled? Was it the track meet I lost?
I didn’t know of anyone going through this but me. So on top of everything else, I was weird. I tried to mask it by being funny, smart, a great dancer, the kid everyone liked despite it all. People were always commenting on my “bubbly personality.” In high school, it was easier to keep at bay. I had figured out what “normal” was and emulated it to the best of my ability. Whenever the sadness came, I pushed it away. When the frantic rush of energy came, I stayed up all night reading my textbooks from cover to cover and writing. It helped my grades. And if my grades were good, then nobody suspected that I was falling apart.
And then college happened and every trick I had stopped working. When my peers were exploring their sexuality and freedoms, I was huddled in my dorm bed, a mess of trembling and tears, confused and distraught about everything and nothing. I still put on the smile and the laughs when I could face people. When I had to retreat, they all thought it was because I was focused and studying. That first semester of college, I returned home with a 0.0 grade point average. I was put on academic probation for the first time in my life. My parents were convinced that I was on drugs or suddenly promiscuous.
What they didn’t know was that since I was 8 years old, I never let myself see past the next 12 months. I was so afraid that if I planned for more, I’d have too much to lose. So I made no plans. I wasn’t building towards any future. I wasn’t sure I’d have one. When college became too much, I dropped out with no plan and no money and moved to New York City. And once again, I was good for a little bit.
But the symptoms of my illness didn’t go away. There were bouts of hypomania. (Remember the first time you were on a Ferris wheel? Remember when you got to the very top and kind of just sat there for a little while, the entire world at your feet? You felt like you could touch the sky. Your entire body was tingling with this amazing sensation of joy. You were giddy. Now imagine feeling that every day for a week or a month or a few months, 24 hours a day, 7 days a week with no break. No “down.” No rest. That’s hypomania.)
There were also bouts of depression, for which I was hospitalized twice. The first time was in 2004. I’d had a breakdown while on a national tour. I became quiet and withdrawn. I stopped eating and sleeping. In Chicago, our wardrobe lady found me in my dressing room, huddled underneath the sink weeping. I was sent home the next day. Before I left, our stage manager, Alice, gave me a list of doctors to call when I got back to Brooklyn. I remember how she hugged me and said, “If you don’t get help Bass, you’re going to die.” Her words settled into my bones the entire flight back to New York. Over the course of the next seven days, I received a diagnosis of bipolar disorder. I’d heard of bipolar. I’d seen the stories of “crazy people” running down the street naked or forgetting to feed their children, but I didn’t see myself in those people so I shrugged off the diagnosis. I took antidepressants and a mood stabilizer for exactly one month; I figured I’d be cured by then and allowed to go back on tour and resume my life and career. But, I was told I couldn’t return to the tour. I was a liability. I was too unstable to continue. What I heard was, “You’re broken. You can’t be fixed.”
It confirmed what I’d feared my entire life: there’s something wrong with me and soon everyone will know.
To say it’s frustrating is to minimize how paralyzing it can be. And then there’s the shame; you have to decide who to reveal your struggle with and when. If I meet someone I’m interested in, do I tell them that sometimes I shrink away or do I wait until it happens? Revealing too much too soon can end it before it begins; waiting too long results in confusing behavior that ends things as well. No matter how you play, someone isn’t going to understand.
Through it all, I’m currently managing my illness. Staying on meds has been a problem. I start feeling better and convince myself that I don’t need it or I can skip a day or two or 30. I’m most likely going to be on meds for the rest of my life. I have to be okay with that. I’m not often okay with it, but the alternatives are worse so despite how tedious and annoying it is to take the pills, I do it. People often tell me that without this illness, I wouldn’t be the writer or the personality that I am now. I’m not sure how true that is. I am who I am despite the illness not because of it. Just because I manage and have found a way to live with this, does not mean that I wouldn’t trade all the writing and creativity and “bubbly personality” for a brain that settles and mends itself like it’s supposed to.
Like so many physical diseases and disorders, getting it under control is the key. Taking care of your mental health is just as important as taking care of your physical health. I wish people could understand that. I wish they could see that mental illness is not who I am. It doesn’t define me anymore than being short or having black hair does.
I’m often asked why I am so open about my challenges, why I put myself in positions to be judged. I’ve made sacrifices in order to be vocal and honest about where I am mentally. In my small way, I hope my transparency can help someone else come to terms with what they have.
It’s a constant fight but it’s a fight that I will always take on. If I want to stay alive, I have no choice. And I do want to stay alive.
We’re always accepting submissions to the NAMI Blog! We feature the latest research, stories of recovery, ways to end stigma and strategies for living well with mental illness. Most importantly: We feature your voices.
LEARN MORENAMI HelpLine is available M-F, 10 a.m. – 10 p.m. ET. Call 800-950-6264,
text “helpline” to 62640, or chat online. In a crisis, call or text 988 (24/7).