The NAMI New York State Education Conference: Using Creativity to Advance Recovery
My speech, November 11, 2017
I thought about how it might be better to just speak and see where it takes me today, but I decided to write instead. When I write, it takes me to a place I can’t otherwise reach. When I write, I tear my organs out on a page, and it can be painful, cathartic, and healing at the same time.
I’ve been asked to be here today to share the tumultuous journey I’ve been on for over ten years, and to tell you how I’ve used creativity to advance my own recovery. More has happened in the last four years than I could ever pack into 15 minutes, but I’ll do my best to tell you how I survived and made it here. It started in June, 2014, when I wrote a short Facebook post about Robin Williams’ death. On the outside, it was a distant tribute to an amazing person we were all sad to lose. Truthfully, it was a subconscious expression of what I was secretly battling: bipolar disorder. The first thing I noticed was the amazing response my post garnered. People were very receptive to a dialogue about suicide and mental illness. The compassion I saw that day really moved me as someone who always strove for a perfection that does not exist. Have you ever heard John Green’s quote, “I fell in love the way you fall asleep: slowly, and then all at once”? After a timid attempt to express my inner truth, I fell completely in love with the compassion that exists in this community, and the propensity we all have for it. I still feel like I haven’t woken up. Soon after that first night, I wanted to share that I had battled years of what I had been told was major depressive disorder. Before I did it, I was told not to “shout it from the rooftops.” I had already made up my mind, though, and I couldn’t be stopped. So, I shouted even louder. Over the next 3 weeks came a series of increasingly raw and revealing posts about my own battles. For the first time in my life, I felt free: from toxic relationships, from crushing expectations, and from my inner demons.
As I look back, I see that my process was difficult and at times, shocking, for my family. I forced my parents relentlessly, to “understand” me, this person they apparently never really knew. I moved from a cautious first approach to a more intense series of proclamations in just a matter of days, already well on my way to total transparency. Essentially, it looked something like this:
“Hi mom and dad, me, it’s me, that lacrosse playing, summer dress wearing girl you’ve always known… I suddenly REALLY CARE about depression. Actually, wait, I have depression, oh, it’s actually bipolar. Oh, and, anorexia. Andddd, I can write some of the DARKEST stuff you’ve ever read but I won’t want to talk about it with you. And I’m now on the highest possible dose of an antidepressant.” For about 6 months, they had no idea what to do or say, and I think they were afraid to ask.
Trying to explain to them the difference between depression and bipolar was difficult. In some ways, it exposed the way generational bias has played into the vastly different perceptions many have of the two illnesses. The ideas I find in manic states, and the low self-worth that comes with depressive ones – this volatility – is what has helped me to be a more creative person. My family has a history of being strong and unflinching in how we present ourselves, possibly a lasting effect of their experience with war, so it was a real adjustment period for everyone when I began to speak out. In the end, we’ve become much closer. These days, I hear them as I stand distantly in changing environments, talking with friends or strangers about my writing, my involvement in this community, as if I’m some kind of hero. I am just as proud of the distance they have traveled to accept me as I am.
The first self-reflective piece I ever wrote was called Colorblind. I delved right into previous toxic relationships, what it feels like to have suicidal thoughts and to have friends taken by suicide. I remember sharing it on social media, where I had fifteen hundred friends and very little emotional attachment to them. Within minutes, I had a message from a friend of a friend, who had been sent the piece. She told me how inspiring she found my writing and that someday she might have the strength to share her own battles. I cried.
Days later, I had amassed at least 20 similar messages; those ranging from support and encouragement to how my writing had apparently helped friends and acquaintances through suicidal thoughts of their own. It is now 2017, and I have a well-established blog, close to 15,000 dedicated readers from across the world, and the frequent privilege of being at events like this. I still receive amazing messages and the novelty never wears off. My supporters give me accountability. If I isolate, I hear from people. If I feel like giving up, I have a support network that spans across the globe. Every few weeks, we host a family dinner and sometimes 20 or 30 people show up. I think that what draws most people to our table is knowing that we are all welcome in whatever form, and can bring with us whatever we are dealing with. We don’t come in saying we’re fine if we’re not, and yet we still laugh until we can’t breathe.
Many opportunities have come out of my writing. I met my friend Zak and, despite having no experience with music, was asked to help out with his production, A Bit Too Much About Me. It’s been so fulfilling to be a part of this community, to have the support of many readers, and to meet such compassionate people. I’ve come to love photography and look at the world through a lens of, “will this convey what I am going through.” I began seeing in metaphors when I told my truth – the color came back into my world, my writing improved, and I could see connections between objects, experiences, and feelings, like never before. I could find beauty and meaning in my physical environment and channel it through writing and photography. I furiously started writing a book and have spoken to publishers, but am now taking a step back from the process to consider what it means to be authentic while navigating a profit-driven industry that wants to control exactly what you say and how you say it.
At the NAMI National Convention this summer, I was once again floored by how tight-knit the mental health advocacy community is. No voice will be silenced here, and each has value. It was “Hill Day,” a day in which NAMI reps advocate for those with mental illness on Capitol Hill. My friend Olivia and I got on a bus with over a thousand others and I was totally uncertain of what I was getting myself into. I had a very specific image in my mind of what the day would look like: we would sit around a table with politicians in suits and I would have nothing to contribute. I almost didn’t go. But what I learned was that in the moments I go out of my comfort zone, I am most rewarded. As we stood with our first representative, my legs propelled me forward to speak before I had even managed to think about what to say. But it came naturally and as I started speaking, I looked around at the faces of my new friends from NAMI. The care and support was tangible and ease came over me as I told my story. We moved on to another representative, and another, and another. Next thing I knew, my friend Matthew Shapiro of NAMI New York State, who I had just met, introduced me to each one, asking that they listen to my story. He is one of the kindest people I’ve ever met and he gave me an unbelievable freedom that day. Soon after we spoke to Representative John Katko of Syracuse. He was so human and hugged me as we left. He shared that he had lost his niece to suicide and shortly after we met, he launched a bipartisan suicide prevention task force. It was a proud day for NAMI.
Despite the occasional pushback I’ve received, sometimes from the most unexpected people, I still maintain my view that it is not selfish to live authentically. Opposition is directly tied to insecurity; it’s really not about you. In my case, the hardest part was learning to be unapologetic in the context of a mainstream culture that says these issues shouldn’t be talked about. Today, I am well-published in the Mighty and other outlets shedding light on important issues. My work has been featured in STRONG Magazine, an educational outlet for young girls to counter society’s preoccupation with appearances and conforming to damaging norms. Years ago, I may not have had a chance with this publication, because fear of stigma would’ve outweighed the editor’s respect and belief in, my story of mental illness.
When I began to take antidepressants years ago, I was afraid of the stigma I might encounter, and the way meds would change me biologically. But, when I saw the positive affects they were having, I stopped apologizing for them. A little square pill began to instill within me a level of courage that would change absolutely everything. I could laugh again and it wasn’t fake. I conquered my list of “not allowed” foods with a new discovery that maybe my worth was not dependent on my size or “discipline.”
In August, I hit a milestone: 50 pounds gained since I began treatment. It was scary but I was also proud of the fight. How could I have been anything less than grateful when I came home to a table covered in flower pedals in the shape of a five and a zero. I am so lucky to have the love that surrounds me. I am optimistic about what seems to be a shifting culture around psychiatric medication; hopeful that it will one day be viewed as no different than any other kind of medication.
For many years, I felt like a black sheep. I cried in my car for hours at a time, wiped my tears, and walked into my house with a smile on my face. I was an emotionally, however not socially, isolated girl. It sounds like an oxymoron, but at the heart of it, it’s really not. Each one of us can show the world only what society says are the “prettiest” parts of ourselves. It’s scarier, though, especially in a polarized society, to show the tears, the lost hope, the unpleasant side effects, the truth. I hid inside a closet for so many years, shielding everyone including myself from the parts of me that make up 99% of who I am as a person: my dry, sarcastic sense of humor, my intense fear of public speaking, my love for running, my fiercely protective side, the light I have found because of the darkness I have seen, and the immense love I have for talking to people about what it means to be human. The gifts that honesty can bring are innumerable.
I wrote a piece called Letter to my Younger Self. I think it really sums up the journey, so I will close with an excerpt from it.
I know it’s not easy right now. I know your pillow is all that shields you from the terror of your worst mornings. You are fighting like hell but can’t yet see it as an act of bravery. In the future, Counselor Gerundo won’t have to drag you from the parking lot to the school entrance. Running a faster mile, getting an A in social studies, and wearing the right jeans won’t matter. You won’t be getting an A for a while and that’s okay.
I know right now you hide in the depths of that full heart of yours; trudge through the muck of being the liability you think you are. One day you will be strong enough to say “I’ve had enough” and, “I am enough.” You will learn to channel your pain into things that are bigger than yourself. You will be fiercely loved once you take that mask off; once you wipe off some of the makeup you hide behind. You will someday wake up without guilt for last night’s dinner. You’ll even find the words for what's incinerating your insides. Instead of burying your face in the vents of a car to soothe your swollen eyes, you will leave the puffiness in plain view. You will not fear the judgment of others because you will know you are enough. But I must tell you, it will get worse before it gets better. You will have to fight to be heard. You will lose the person you most trust but the void will be filled by the courage you found when you said, “I am better than this.” You will have to write through elation, tears, and loss, and sometimes doing so will only intensify what you feel. But you will suddenly find relief after you’re done. You will need to learn to ride out both the manic moments and the lows.
When you’re manic, your mind will fill with ideas, aspirations, and a frenzied need to tell everyone in the world that you love them. This pattern is part of what will feed the passion and vigor you have for life. In your lows, you will withdraw into yourself and your flame will burn out before you even know it is upon you. In time, the fire will re-ignite because you are not nearly as disposable as you feel right now. Someday, you will sing often, cook lavishly, eat real butter, and dream in color. You will save a puppy who will save you from yourself. His name will be Tubs and he will be emotionally fragile just like you are. But your fragility will someday be your most respected asset. Tubs will need to be swaddled in a blanket often, just as you will. Like you, he will be hypersensitive to sound and hide when he is irritable. But you will both find someone who wants to love you and draw you back into the light. Your brother will one day be your best friend, not just the kid who went to boarding school and never lived at home again, or the one that zipped you into an Orvis bag. Remember the first time you learned he’d always be there for you? A bully tried to punch you in the stomach and he stepped in the middle. He was smaller than you at the time but you were still his little sister. You will one day be thousands of miles apart but you’ll still carry him with you.
One day, you will be able to tell a man on the subway that you are depressed and it won’t be scary. You will be proud to know that everything you do is well intentioned and every day has meaning. One day, you will no longer let worry make you physically sick; you will fight for people just like you who can’t see the light. One day, you will be exactly the person you need right now.