The Voice Inside

On living with the quiet voice of survivor’s guilt

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It’s the summer of 2020. I’m driving down the highway when James tells me from the passenger seat, “I love you. I think you’re a good man.”

James is 24 years old and has Down’s syndrome. On Saturdays I take him to the park so his parents can have a break from watching him. The state calls it respite care and pays me minimum wage through an agency. It barely pays for the gas I spend in a typical afternoon with him.

Eventually, I know, I’ll have to say goodbye to James. An opportunity will come my way that’s too good to pass up, one that takes me to a different city or takes up too much of my time and energy to spend my Saturdays with him. I want to have kids of my own and start a family. You can’t do that making minimum wage taking people with Down’s syndrome to the park.

So I don’t hear James’ innocent “I love you” the way I know he means it. I hear it as an accusation. “I love you, and someday you’re going to leave me.”

I struggle to keep my eyes on the road as I blink back tears. A voice in the back of my mind whispers, You’re not a good man. You’re a piece of shit who’s using this poor kid to deal with your survivor’s guilt, and when you’re done with him you’ll leave him behind and break his heart.

It’s the summer of 2011. I’m driving down the highway and telling my girlfriend Dee about a conversation I’d had with my sister about our younger brother Kenny.

Kenny has Klinefelter’s syndrome. He has low testosterone, he’s overweight, and he’s at risk for diabetes and a number of other health problems. Our mother is worried about what will happen to Kenny when she’s no longer around to care for him.

I tell Dee that my sister had said, in so many words, “Well, he’s not staying with me.” Nobody holds that against my sister. She’s got three children of her own and two stepchildren.

Dee doesn’t bother to let me circle around to the point. She just says, “Of course not. He’s staying with us.” She says this in the same tone of voice she’d use to offer to do the dishes tonight. This is not a question in her mind. If it’s important to me that Kenny is taken care of, then we’ll be the ones to take care of Kenny when the time comes.

I will break up with Dee a year later. But when I think of her now, I think of this conversation. It reminds me why I spent so many years with her, and allows me to think of those years with fondness instead of bitterness.

I continue driving in silence. My mind is creating a picture of what Kenny living with us would look like. Some of Kenny’s weight problem has to do with his Klinefelter’s syndrome, but a lot has to do with his habits. He regularly eats an entire value-sized box of Kraft Macaroni and Cheese in a sitting, followed by a carton of ice cream. He doesn’t exercise.

I have recently started a gym membership, learned a bit about nutrition, and started losing weight and gaining muscle. I have seen the difference in how I look and, more importantly, how I feel. If Kenny ever lives with us, I decide, I will make sure that our pantry doesn’t stock the foods that tempt him to overeat, and I’ll try to help him find a workout plan that works for him.

Kenny never lives with us.

It’s the winter of 2016. Kenny has just died at the age of 27. He still lived with our mother. He died of being overweight. That’s not what it says on his death certificate. Officially, his cause of death is “sudden heart failure due to complications arising from Klinefelter’s Syndrome.” But really, he died of being maybe 80 pounds overweight.

I’m now dating a woman I’ll call Amy. I have a memory of her that I hold dear, like my memory of Dee. This is not that memory.

Amy is a little overweight. Not morbidly obese like Kenny. Just maybe a little overweight for her height. She used to do roller derby but fell out of it. For the past few weeks she’s been making plans to rejoin her old team in the next season. I encourage her, thinking that a regular exercise outlet might be good for her.

We’re talking on the phone, and she announces that she’s not going to rejoin roller derby after all. I say something like, “Oh, that’s cool. What will you do for exercise instead?” I babble something about having thought it was a good idea to get some exercise. I don’t remember the details of the conversation very well. I remember trying to sound nonchalant, but feeling that it was very important that I encourage her to have healthy habits.

The way I’d always meant to encourage my brother, but never did.

48 hours later she calls me again, distressed, weeping. She hasn’t eaten since our conversation. She doesn’t understand why I’m suddenly so interested in her weight when I never was before.

I remember even less of this conversation. I know that it ends with me breaking up with Amy. I’m terrified by this power I have over her, to prompt her to stop eating for two days with a phone conversation I barely remember. I don’t want to have that power over anyone.

I don’t connect any of this to my brother. I won’t make that connection until years later.

It’s the fall of 2020, and it’s Saturday. I’m driving James to the park. The movie theaters are reopening, and James wants me to take him to the movies. I told him to ask his mother, and his mother told him that he could go to the movies if he reached the weight loss goal his doctors had set for him.

I tell him that I lost some weight once, and that I did it by exercising with a weighted mace in a park just like the one we’re going to. I ask him if he’d be interested in seeing how I work out. He says yes.

We stop by my house to pick up my dog, and I throw a couple of weighted maces in the trunk of my car. I choose a 15-lb mace for myself and a 5-pounder for James.

The voice in the back of my mind whispers that this is all a mistake. That if I do nothing James will die afraid and alone like Kenny, but if I do what I’m planning to do I’ll just hurt James the way I did Amy. It tells me that I’m a piece of shit for doing this, that I have no business trying to help anybody with anything, that all the Jameses and Amys and Kennys of the world would be better off without me.

I don’t try to silence that voice. That voice is always with me. It never leaves me, and attempting to drive it away is wasted effort. I just let it run its ragged circles through my mind.

James and I arrive at the park. I show him my daily workout routine, simplifying some of the motions when they’re too hard for him, slowing them down and showing them to him step-by-step. I notice him struggling about halfway through what’s supposed to be a 10-rep set, so I decide we’re done after 5. I smile and tell him he did a great job.

He rubs muscles that are atrophied with disuse. I ask him if they’re sore and he says yes. I tell him, “That’s good. That means it’s working.”

We eat our lunch and watch our dogs play in the grass. On the drive home he tells me, “I love you so much.”

The voice in the back of my mind never goes away. But some days, just some days, I can hear that I am loved and the voice gets quieter instead of louder.

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