Changes and Struggles
My nephew struggles. As a teenager, he was diagnosed with the early stages of schizophrenia, and, now in his middle twenties, he suffers the painful symptoms of lapses in perceived reality. We’ll call him Carmen.
It hurts. I try my damnedest to ignore the signs of the raging battles Carmen endures every day: shouting matches with ugly thoughts and maligned voices. But it’s a struggle even for me. Luckily, he continues to take his medicine. I try to remember that drugs are a crutch and not a cure and avoid comparing him to who he was before his diagnoses and symptoms. He’s not a different person. But, one of my inner voices—the one that likes to whisper when it’s dark and quiet—tells me he’ll never be “the old Carmen,” as though he’s somehow no longer my nephew. It’s wrong. It’s wrong, and I hate it. The comparison only does me a disservice and him an unfair prejudgment, and yet there’s something painfully accurate about it. He’ll never be the kid I remember.
As though an insult to injury, he’s also been diagnosed with Tourette Syndrome, which causes convulsions and outbursts. One of the hardest things to watch is when someone, usually a family member and usually via some feeling of imposed guilt, has to spend an extended amount of time with him. It’s not too long before they’re telling him to “chill out” or “control yourself” as though he’s coughing and needs to hold it in and cover his mouth for the sake of our comfort.
I paint myself as some benevolent character, sticking up for him and reminding people that he can’t simply stop making noise. I also see him struggle when he’s all alone, so I try to find work or activities for him to do. It’s hard. He’s painfully unemployable.
This week I got him a few hours of work washing dishes and cleaning up at a catering gig I’ve taken, dusting off my chef knives as a side-hustle from my day job. I was worried. I did my best to warn my coworkers. I took Chef aside and let her know the situation. She told me not to worry about it like that could ever happen. I’ve seen how he’s treated, even by family. But I sucked it up, said “yes Chef,” and hoped for the best.
Saturday morning, I picked up Carmen, and we made our way to the kitchen. I stopped, grabbed him some breakfast (he had forgotten to eat, yet another symptom of the diagnosis), then picked up a couple of packs of smokes, and a cup of coffee and prepped him for the day. I let him know about crunch time, the point in the shift when everyone is running. I didn’t want it to be a surprise. Surprise anxiety manifests quickly and harshly for those stricken by his ailments.
When we arrived, I showed him around and put him right to work. He fit nicely. He was polite, attentive, and said “yes, Chef,” just like the rest of us. I was proud. Maybe it would go well.
A couple of hours later, we got the call that one of our kitchen hands had called out. Chef put Carmen on apps, having him fill delicate phyllo dough cups with goat cheese, spicy chutney, and a candied walnut. He concentrated so hard. I watched him place a dollop of cheese and topping with intent, then set his work down and clench while shaking his fist violently before going back to assembly. It was like he was told before. He was holding his outbursts like a cough.
After a few hours, we went out for a break. All the kitchen hands sitting around in the shade smoking and drinking coffee, laughing and telling stories. Chef asked Carmen how he was doing to try to bring him into the conversation. He opened up. He mentioned his exercise activities and favorite video games, then told everyone about his diagnosis, being sure to say that he was medicated, so they didn’t need to be scared or worried.
I was nervous but immediately dumbfounded. Chef listened to every word, nodding along. And when he finished and was looking embarrassed, she told him to look around. “I have Addison’s Dieses,” she said, smoke pressing through her lips as she spoke. “Ash has ADHD, and your uncle has a bad back; Erica has bad legs. We all have shit. And maybe it’s a weakness, but we’re not ashamed of them. They don’t make you less, baby. We’re strong together.”
I blinked away tears and pretended I was coughing. I’ve watched, first hand, people look at my nephew and immediately judge him as too much effort, so much that he was expendable. Firing him or sending him to a room, or asking him to go for a walk was praised as a way to save patience or money. And even though he was dismissed, Carmen would do as he was asked. He’s disabled. He struggles. He’s not stupid. He knows what it means when people tell him they “don’t need his help anymore.” But Chef showed compassion.
Maybe it was the spirit of the kitchen, that comradery born among willing souls who intentionally lock themselves in a thankless battle with heat and time. Or maybe Chef had lived through her own battles and saw fit to help, to follow the word of James 1:22 and 27 unintentionally.
“Do not merely listen to the word, and so deceive yourselves. Do what it says… Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.”
I was proud of Carmen this weekend. And I was proud to be part of Chef’s crew. Maybe I’ll be proud of myself eventually. Maybe I’ll remember that Carmen will never be the carefree kid I remember, but that doesn’t make him any less the nephew I love.
Luckily for me, he’ll be back to work this Saturday, so I’ll have another chance.
National Suicide Prevention Week was September 5 through 11 and for those lucky enough, it slipped past quietly and unnoticed; one week like so many others. However, for the rest, it was a painful reminder of a past, or worse, a poignant reminder of a current struggle. Even now the issue is taboo but silence is a battlefield where casualties lay in the dark and quiet. It’s closer than we know and I refuse to let the hurt take root.
In my personal experience, being seen can make the difference and the wonderful people at the National Suicide Prevention Lifeline (800-273-8255) offer exactly that: a listening ear to the ones willing to ask for help. As for the lucky among us, simply noticing and offering a kind word can be enough. And, if the conversation moves out of your breadth, the NSPL can help.
The world is a painful struggle sometimes, even for The Loud Christian; but it would be so much worse without you.
