It was a seemingly innocent joke on Facebook. Except it wasn’t. Not to me anyway. Or to anyone with schizophrenia. Or to a family member.
That’s me. A family member. My older sister is the one with schizophrenia. So when I saw the joke my friend posted — a real friend, not just a Facebook friend — I was shocked. I was pissed really. Incredulous. “How could she do this? And laugh about it in the comments with her friends!?” Because this friend knew my sister. This friend knew my parents. I was deeply hurt. And angry.
I responded a couple of times in the comments about how it wasn’t right to post it. That it’s a horrifying experience for a person with schizophrenia to hear voices. And, it’s terrible for the family members. She didn’t apologize, but made excuses, to the effect of “it’s just a joke, didn’t mean anything by it.”
Before the back and forth devolved into some Trumpian argument, I decided to write about what it’s like as family member. To take my anger energy and do something positive. So maybe, just maybe when you hear a joke about someone with mental illness, you will have the courage to step up and say, “hey, that’s not funny.”
God knows I have said things that were wrong. Judgmental. Ignorant. And I know with my heart that my friend’s intention was not to hurt me.
But still.
Janice (not her real name) has languished in nursing homes in Austin, Texas since she was 58 years old — about 10 years now. Note that I wrote nursing homes, not psychiatric centers or psych hospitals. That’s because there is no psychiatric treatment place for her to live in the great state of Texas. As you can guess, Texas isn’t so great for the mentally ill.
And that’s why she languishes. Because there is no mental health treatment in a nursing home. There’s a bed and some LPN’s and orderlies to help bathe her periodically. And change her adult diapers. And bring her food that she sometimes throws on the floor or against the wall. There’s a TV with the volume on loud. Her life is circumscribed by her illness, her weight increase (caused by the extreme side-effects of early medication), and a system lacking in real mental health care.
It’s like going to a hospital because you have cancer, but they don’t have any chemo or radiation or immunotherapy. Could you imagine that?
The first couple of nursing homes Janice stayed in were really nice. The kind of place you’d be ok with if your Aunt Alice lived there. Each of the fancy places had a few rooms dedicated to Medicaid patients, which is what Janice subsists on. But sooner or later, she would be asked to leave because her behavior (yelling from her bed) would disrupt the other residents.
The Last House on The Block
That’s what people call the Medicaid based nursing home where Janice has languished for the last 8 years. And I thank God for it every single day. Because if she didn’t have that, I don’t know where she would be.
The first thing you notice when you get buzzed through the locked doors into The Last House on The Block is that most of the people milling about don’t look very old. They don’t look like the residents in the nice nursing homes. These people are much younger. Some of them talk nonsensical rhymes. Or yell. Or moan.
There’s no burnished, dark wood paneling. Or paintings. Or carpets that match the drapes like at the nice places. Here, the aging green and white linoleum floor tiles are stained and dirty. And finally, the one elevator is repaired so that I’m not scared to ride it.
Janice is on a west wing on the second floor. Everyone knows her. The last couple of times I’ve been to visit she talks a lot about the Russians. I can tell she’s been watching the news. She’s scared that the Russians hold her hostage. She’s also sick and tired of our brother knocking the metal sides of her bed. She’s clearly troubled by it all.
Except, in reality, there are no Russians, and our brother is 1,200 miles away in Virginia. But, I can’t tell her that because her world is straightforward:
the Russians talk incessantly to her, they won’t let her leave, and our brother won’t quit the clanging on her bed rails.
It takes a little while, if I’m lucky, to get her to recognize me. “Oh, Lisa!” she says in an upbeat singsong voice. Each year her formerly unfailingly positive demeanor recedes into the past. The disruptions and voices in her brain come more frequently now.
She asks about Mom and Dad. I remind her, realizing as soon as I said it, I shouldn’t have said, “I told you, Janice, remember Mom died 3 years ago and Dad died last year.”
“No one tells me anything! I’m always the last to know!”
There’s no logic in our conversation. If I’m lucky, I can pull out some fun childhood memories, and we can have some laughs. I might play some music on my phone. I almost always bring lavender-scented lotion, and if she lets me, I rub it on her arms and hands and feet.
There’s always a point that is impossible to identify when it will come. It’s the point when you know you’ve overstayed. And the yelling starts. And then my heart drops, and I know I must leave. This heavy feeling stays with me at home in Phoenix.
It wasn’t always this way. Janice used to live on her own. She had jobs — she could type 90 words per minute! She had her own apartment. She took piano lessons for years and played classical music beautifully. She had a hearty laugh. She was rarely depressed. Even though she was “different” and had very few friends in her lifetime and never a boyfriend she always wanted.
Mental illness, schizoaffective disorder to be precise, came on slowly but very effectively. And by the time Janice turned 40, it was full on, and she couldn’t work anymore. She lived in a federally-funded apartment for the disabled and elderly.
But, she always had hope. She was going to win money — Publishers Clearing House! Or get married. Or start a business. I don’t know where her hope came from because if you or I lived her life, we’d likely be hopeless.
Today hope is mostly gone as her languishing increases. I wish, as my Mom did, that she had a friend or just someone who would come to visit her every week.
As I leave her room and walk down the hall maneuvering between the LPNs, orderlies, and patients, tears well up in my eyes. I breathe deeply so they don’t come full force until I get into the car. And then I cry hard.
Sometimes I feel guilty about my thoughts:
What kind of life is languishing? There is no cure for schizophrenia. Why doesn’t God take her? Why can’t she go to heaven with our parents and oldest sister? How long will she go on?
I’m grateful for The Last House on The Block because if not for it and the dedicated ones who work there, most everyone here would be on the street.
I’m grateful too for how Facebook has allowed me to stay connected with friends around the world. But I want to make a deal: Let’s all be careful about what we post on social media. Let’s work to make a better community with compassion and celebration. And, let’s not let humor be at the expense of someone who has absolutely no voice in it. And, if you see it or hear it, I hope you own the courage to stand up for what’s right.
