“I gotta go.”
That’s what my dad said suddenly in the middle of my basketball practice. He was the assistant coach of our girls’ team. He never missed a practice and certainly never left early. I was only 10.
This is weird, I thought.
“I’ll take you home, Jayne,” my other coach said. “Don’t worry about it.”
I couldn’t concentrate the rest of practice. I tried not to panic. When we were done, I got in the back seat of my head coach’s car with a couple of my teammates. I was quiet. They didn’t say much either.
Everything about my life was normal. We were the perfect American family living in a suburb just outside of the Bay Area. My mom was a nurse and my dad, a lawyer. They were happily married with four kids — three boys and me. I looked up to my two older brothers. Our younger brother was almost a cartoon of a stereotypical younger bro — always tagging along but always falling behind. We lived in a three-bedroom house until we could no longer fit. Literally. My two older brothers and I are six-foot-four, and our younger brother is six-foot-nine.
Bunk beds weren’t gonna cut it.
We moved to a bigger house but in a similar neighborhood — pretty green lawns, tree-lined streets, middle-class families. All four of us played sports. In the summers, we swam; fall was soccer; winter was basketball; and in the spring, baseball.
We all went to each other’s games. Our mother drove us everywhere. She was the glue in our family — a Southerner with a politeness in everything she did. If we were out playing in the neighborhood and it was time for dinner, she’d ring a bell on our front porch — just like her family did back in Virginia — and we’d come running.
Our most common meal, though, was the blue plate special. That’s what my mom called it. By the time we were in high school our schedules were so busy that rarely were we home to eat dinner together.
“Your plate is in the microwave,” Mom would say when we walked through the door. I’d open the microwave door and there it was — dinner on blue Tupperware.
Blue Plate Special.
From the outside, we looked like a perfect, well-oiled machine. We were the family that people hoped to have.
Until the cops came.
That was the first time I realized something wasn’t quite so normal.
My coach pulled up to our house. Three police cars were sitting in the driveway.
“I’ll just take you to your neighbor’s house and you can hang out there until your parents can get you,” he said.
I didn’t know what was going on. Usually the police only come when something is wrong and you need help — that’s when you call them. Clearly, my parents needed help. I didn’t ask much, either. My friends and teammates were seeing all of this right beside me. They didn’t have cops at their houses. I was confused, but I was also embarrassed.
I went to my neighbor’s house and waited. After a few hours, my mom came to get me.
“What happened?” I asked.
“There was just a situation with one of your family members and we called for help,” she said.
She didn’t say much more than that, and as a family, we didn’t really address it. I figured it was a one-time thing.
But the episodes continued. The police came again. And again. They were at my house pretty often.
“Go upstairs,” my mom instructed us each time. And each time, my brothers and I went to our parents’ bedroom. We chose that room because there was a bathroom attached to it. We were going to be there for a while.
We could always hear yelling, but there were different voices. Sometimes it was the police or a neighbor, sometimes family, and other times, we weren’t sure. We never really knew what was actually happening downstairs. I’d turn the TV on and put the volume up to drown out the screams. They were panic-filled and terrified and angry. I didn’t want to hear any of it — probably for the same reason our mother sent us upstairs: protection. Not from danger but from the image we might have of our family member if we saw or heard too much.
There were about 10 episodes of that scale, but they weren’t predictable. Sometimes we would go six months without one, and sometimes there would be two in one month. The behavior of our family member developed slowly but consistently over time, becoming more prevalent throughout the years. At first, doctors explored different mood disorders and the diagnosis was bipolar. But with each mental psychotic breakdown, we weren’t sure.
I didn’t know what was going on. Usually the police only come when something is wrong and you need help — that’s when you call them. Clearly, my parents needed help.
It was a long process to reach a diagnosis. It can take years, generally, but we had to find the right doctors — medical and psychiatric — and the right medications, especially if they had side effects. It’s not like you can give a mentally ill patient a drug and ask them, “How do you feel?” A fully functioning person could answer that question with ease. If I broke my leg and was given medication, and asked, “Did this drug help the pain?” I could answer, “Yes, I feel better.”
My family member couldn’t do that. So, we all managed it together through misdiagnoses and medications. And then, about four years after my coach drove me home to find police at our house for the first time, the official diagnosis:
They’re … crazy, I thought.
They weren’t crazy. I carry so much guilt that I even had that thought. I just didn’t understand the illness. They couldn’t help their behavior any more than I can help but breathe. My mother sat me down and showed me a scan from a UCLA study on schizophrenia. It showed two brains from identical twins.
“This is what I want you to understand,” she said. “Look at the one on the left.”
I looked. It seemed normal — the usual greens and yellows and blues.
“Now, look at the one on the right,” she said, moving her finger over to the other brain. “This is what schizophrenia looks like.”
It was lit up in bright red. For the first time, I could actually see the chemical imbalance. I could see the disease itself and not just its symptoms.
My parents sent an email to about 50 of our closest family and friends, informing them of the official diagnosis. They wanted to explain to everyone what was happening over the years, and ask for help. The thing is, there’s no outline of how to help someone who has a mental illness. So, we figured it was time to talk about it. We didn’t know where to turn. We were hoping for prayers, support or any advice.
It took time to understand the way my family member’s brain works, and to understand it’s beyond their control. Schizophrenia is different for different people. Many people have racing thoughts to the point of mania. Some hear voices; some have a whole list of characters that talk to them in their head. They can’t make it go away.
I wanted to know what that was like. I visited a website with a schizophrenia simulator. You’re prompted to read a paragraph while listening to various schizophrenic effects. It was the most straining thing I’ve ever experienced but it allowed me, on some level, to understand what it might be like living with this mental illness. The thing is, I could turn it off. Anyone who listens can turn it off by choice. Imagine not having that option.
Often, mentally ill people won’t accept they are sick. My family member has never said to me, “I’m sick.” Sometimes mentally ill people understand that they have to take medications to make them feel better, but many, especially those living with schizophrenia or bipolar disorder, literally have a lack of awareness as to their condition. It’s called anosognosia. (I learned that, too.) And stress can exaggerate or trigger their symptoms. My family member has learned to manage them, but they still manifest.
My family member can sit down at Thanksgiving dinner, for example, with all 30 of us, and be totally present. But when the conversation is going one way, they might be thinking about something else and make a comment about that. It’s hard for them to stay on topic sometimes. Imagine their brain like a hamster wheel — it circles and circles. If you met them on the street, though, you wouldn’t know anything was wrong. They can converse with ease.
It’s easy to see the illness and not the person. That’s not just because there’s a lot to a person’s illness we often don’t understand, particularly mental illness. But it’s the way we talk about it. I really like The Dark Knight. But there’s a line in the movie about the bad guy that says, “Don’t you get it? He’s schizophrenic. He doesn’t know any better.” When there are mass shootings, one of the first causes media may list is possible mental illness. We dehumanize and ostracize a whole population of people, especially those with schizophrenia. Many people imagine a person with a split personality, or someone talking to him or herself on the street corner. The assumption is that schizophrenics are bad and dangerous people. Well, that big bad boy on the corner is the last one to be dealt with and understood, and that’s the problem.
The “bad” person in this case lives alone, has a supportive and wonderful family, and has held a steady job for nearly eight years now. But they don’t have friends and relationships the way most people do. They are not as integrated socially as most people their age, and not necessarily by their choice but rather, the choices of others.
My family member recently signed up as a fill-in for a recreational softball league. You know the kind — mostly made up of 20- and 30-something-year-olds who want a little physical activity but use it more to socialize. Play a little ball, and go have some beer and pizza with your friends after the game. When the teams need an extra person to show up, they call the fill-ins. But when it came to my family member, they would call and say, “We’re going to practice at three o’clock,” when the team would actually be practicing at two. The team would tell them the wrong time purposefully.
My family member never got invited for pizza or beers. And throughout the season when there was need for fill-ins, teams didn’t call my family member — a person who paid to be included and still wasn’t.
Sometimes it’s easier not to deal with something you don’t understand or might be fearful of.
The disease has stolen so many life experiences and moments from my family member that I don’t want people to do the same. We make it a point to invite them to things, be it something as big as vacations or as small as dinner. An invitation would allow others to see the person we see: a kind soul with an infectious energy. That takes looking past the illness.
When my family member is specifically invited to something, I’ll hear about it for days. My dad takes them to baseball games – just the two of them. It’s their special thing they share exclusively with one another. My family member loves the Oakland A’s and San Francisco Giants. They can name every person on each roster, recite stats and remember records. The two of them dress in their team gear, buy nachos and hot dogs, and fan out. The same things people take for granted each day, my family member cherishes it as if it were gold.
And that’s just real life. There’s also social media to take into account, too. Seeing other family members or people their age posting about marriage or kids only magnifies a feeling of exclusion. It must be hard to have imagined a life for yourself that you may never live, but others do and share. All of those things — relationships, children — should feel like an option for my family member but also all of those with a mental illness. That it may not — that they may feel isolated through their years — is heartbreaking.
My family member will continue to live with this illness for the rest of their life. Nothing can make it go away. But we can change how we treat, talk about, relate to and understand people like them, or others with mental illness.
All they want is some version of normal.
Maybe the normal everyone thought us to be.
The WNBA and San Antonio Stars will host mental health awareness night on September 1. For more information on Jayne Appel-Marinelli’s mental health advocacy, and information on mental illness, visit www.bringchange2mind.org.