I don’t like the word “crazy”. It leaves a bitter taste in my mouth, and it’s a term I have run from in my life. I don’t want to be crazy. I don’t want to feel helpless and out of control.
But as the song goes, you can’t always get what you want. Over the past several years I’ve had ample experience with “crazy”—personally, professionally, and in my family. I’ve made it through to the other side while others have not, and the experiences have only strengthened my belief in the importance of changing the way this country approaches mental health care. It is my hope that in sharing these experiences, I can help jumpstart a conversation about mental health in this country that is long overdue.
Working to Be “Not Crazy”
As a teenager, I was desperate to be different than “crazy”. I struggled with anorexia and the pressure to be a perfect distance runner. My anxieties threatened to consume me with the fear that I, too, would end up being saved some day—as my father had saved my mother, pulling her from her depression. I would cry, drink alone in my room, and write angry poetry about the complexities of my mind, about being left to grow up on my own as my mother traveled the globe on a quest for corporate domination. I have grown from my years of teen angst, but my anxieties surrounding “crazy” have not altered.
I’m not the only member of my family to feel these anxieties. Two years ago, my then-nineteen-year-old little brother and I sat parked in our driveway. I can picture it so clearly: He gazes at me, tears falling down his beet red face. “Jo,” He pleads. He grips the steering wheel as his hands shake. “Jo. I am not crazy.” I nod. “I know crazy Jo, and I am not crazy. Mama is crazy.” I nod in agreement. My brother is upset. Misunderstood. Growing up. Still processing his angst.
This past year, my brother (pictured above) was diagnosed with Bipolar Disorder upon being admitted to a hospital’s psych ward for 10 days. The scary, manic, psychosis-experiencing, hearing voices, “let’s practice flying off the roof” kind of bipolar. The kind that turns a star athlete and life-of-the-party Golden Boy into a recluse who fears the world and won’t leave his room for months. The kind that forces a twenty-one-year-old kid at the beginning of his life into hospitals and electroconvulsive therapy.
My brother’s illness terrifies me. In the months leading up to him getting help in Colorado, I would sit outside his bedroom and listen to him screaming out of desperation at voices inside his head. He would tell them to leave him alone. He would verbally attack himself, telling himself that nobody loved him or liked him. That nobody wanted him there. That he was worthless. That he deserved to die.
My little brother suffered for months with the terrorizing voices in his head, trying to hide his illness. He didn’t want to go back to the hospital with the catatonic masses. He would suppress his reactions in public, but within the privacy of his room he was tortured by instructions to kill himself and hurt his family.
A Deathly Drug
I knew that my brother was on a medication that could make his skin fall off.“How terrible,” I remember thinking. “Who would put somebody on such a drug?”
My brother was in Colorado being treated for Bipolar Disorder, about to begin electroconvulsive therapy, and I knew that afterward he would be forever changed. I want to help him and others like him—to see, to understand, and to remember what the illness was like before treatment. To give the world a glimpse into the lives and struggles of those who suffer from mental illness.
I am an actor, and what I know how to do is tell stories. So I created a film production company, 26 Percent Productions, to tell my brother’s story and the stories of the millions of people who are affected by Mental Illness. Twenty six percent of Americans suffer from a diagnosable mental illness, and it only seems right the work that my company produces gives a voice to those who suffer.
I also knew that come hell or high water I would get my own depression under control. So I enlisted the help of my psychiatrist, who nonchalantly prescribed me a drug called Lamictal.
Ten days later, I was filming a documentary about mental illness with my brother in Colorado, only to find myself, unexpectedly, in a hospital. This time, I was the patient. A rash had spread all over my body and mucus membranes. My mouth and throat were exploding in painful lumps and a white paste resembling a yeast infection. My lungs were bubbling inside of me. My eyes burned. To go to the bathroom felt like an ancient form of fire torture.
I had developed Stevens Johnsons Syndrome, a rare immune reaction to my prescription of Lamictal—the same drug that my brother had been prescribed with intense caution. The same drug for which he got blood tests and for which the dosage was slowly increased every two weeks. My prescription did not include such precautions. As a result, in response to the drug my body decided to burn itself from the inside out, making my skin fall off.
Dreams, Screams, and Psychosis
I do not remember anything past the first day. I was transferred to the University of Colorado Hospital’s ICU burn unit, where I remained for the month of March in a drug-induced coma, on the brink of death. My body burned. My rash turned into bubbling blisters that sloughed off internally and externally. In order to save my sight and my life, I endured two amniotic membrane surgeries and was put on life support.
While I was sick, I experienced an intense psychosis that was so real and so terrifying I honestly believed I was being sexually abused and that I would never see my family again. This psychosis lasted for days in the ICU. At one point, I tried to run away from the hospital on all fours and found myself, soon after, in a straitjacket with each wrist bound to the bed. Any human under the influence of such high doses of pain medications and sedatives might interpret their physical state and inability to move as torture.
The experience of coming off my pain medication in the hospital and realizing what was real and what was not real was disconcerting. I had daily therapy sessions. I should probably get a PTSD counselor. But my psychosis has ended. I experienced truly “crazy”—and let me tell you: It is a scary, scary, slope to slip down.
The Path to Recovery
I lost my looks. I lost my body. I lost my muscle mass and energy and a month of my life. But I lived.
That is my first accomplishment. I can sit here and be thankful today that I have a voice. That I have my sight. That I lost only 60 percent of my skin. I can be thankful that slowly but surely my eyelashes will grow back and the red baby skin rash covering my body will fade over the next few years. My wounds will heal. I will move on. I will move back to New York and use my new perspective for good. I will get back on that stage and into those auditions and I will create documentaries that change the world.
I’m all good.
Well, I will be all good.
The Ones Left Behind
My brother, meanwhile, is still in Colorado. He is still on Lamictal. He is still undergoing electroconvulsive therapy and every day is a struggle. I do not know what rests in his future. I hope for the best. But as one of my brother’s doctors put it, “Mental health is the bad stepchild of healthcare.” It doesn’t get the support it needs and nobody wants to talk about it.
Instead, we rely on quick fixes. In modern (Western) culture, the swings of highs and lows that we as humans feel are being plastered with false promises in prescription bottles and overpriced therapy. A quick fix for our every emotion. We have found solace in bottles. Pills. Booze. We feel better knowing that our money is being spent on “fixing us,” even if our shrink just prescribes us pills.
But maybe we were never really broken. Some of us have it rougher than others, but I guarantee that if we took a step back we would witness what the literary canon was writing about all those years ago: the human condition. Pain and desperation have been around for a lot longer than we give them credit for. It’s just that our perception of them has shifted. Maybe all I needed during the dark times in my life—all most of us need—was a friend. Somebody to hold my hand and tell me that these feelings, dear human, are part of growing up—part of life.
Today, I can advocate for myself. I have a voice. But it is those like my brother who do not. The silent sufferers of mental illness, the men and women who sit alone, afraid to leave the house. To be a casualty of the drug companies is one thing; to be a casualty of your mind and a failing system is quite another.
What can be done? We must advocate for them. We can give them a voice by spreading awareness of mental illness and of Stevens Johnsons Syndrome. By ending social stigma and shifting people’s perspective in regards to the “scary crazy people”.
The truth is that my brother is afraid of you, dear reader. Probably more so than you are of him. He is kind and gentle and likes to draw and do physics problems. He is soft-spoken and has a sheepish smile, boyish good looks, and a quick wit. But he is tortured by a sickness that cannot be fixed with an antibiotic and a bandage. It doesn’t have a clear-cut beginning and end. But that does not mean, under any circumstances, that he should be left by the wayside.
How to Help
We must allow it to be okay for people struggling with mental illness to ask for help. We must hold our judgment and support the evolution of mental health care toward a system that supports the full road to recovery—a system that doesn’t pick and choose who it will heal based on their monetary value or their insurance.
It is not enough to lock somebody away and throw away the key. We must be brave enough to admit that 26 percent of us struggle with mental health issues. Brave enough to admit that we as individuals may belong to the 26 percent, and that that’s okay. It is okay to feel afraid, to question reality, to feel “off”, to feel excruciatingly low. Heck, it’s even okay to run around naked on the roof every so often because a voice told you to. What is important is to know that those who do are not alone and that there are people in this world who care. Who want to help.
Even if you are not part of the 26 percent, you know someone who suffers. It is now the time to be brave. To muster the strength to ask for help or lend a helping hand. To change the way you think and talk about mental illness and its treatment, which in turn has the power to change the way other people think about these issues. It is time to listen. To embrace the 26 percent and the stories they have to tell.
My wounds will heal. What I cannot tolerate is a system that tells my little brother his cannot.