The miraculous life of Jonathan Swain

Neil Willenson, founder of Camp Heartland and friend: If you think about Jon’s life, I don’t know anyone that suffered more.

In the winter of 1995, Jonathan Swain was losing his life-long battle with AIDS. He had been the consummate fighter; now he was depressed and alone. He’d already lived longer than he should have. Now, surely, he was done.

Jon Swain: I thought about death, but I wouldn’t accept it for me.

But Jonathan Swain is alive here and now, flashing his trademark smile.

Keith Morrison, Dateline correspondent: But you’re supposed to be dead?

Jon Swain: Yeah. Crazy, I guess ever since I was a kid, everyone told me I was gonna die and I just always knew deep down inside; I had faith at three years old that I would be alive.

He was alive despite AIDS and despite the abandonment by the person he needed and loved the most.

Jon Swain: Just think about your childhood hero. Would you want to think that your childhood hero was doing drugs?

As he remembered it... the realization came slowly that cocaine had stolen his mother away, that in her desperation to get high, she’d forgotten his needs.

Luckily Jon had his older brother Josh to protect him, not only from the world outside but his own mother, but then Josh left. It was hard, even for a boy as strong as Jon, to withstand the downward spiral of a junkie for very long.

Jon Swain: That’s when it got disastrous. Josh is gone. I’m by myself. There were no escapes at this point. Optimism... there was none.

Morrison: Pretty desperate.

Jon Swain: Yeah.. Soon there’s a hooker living in the bedroom next to mine—just junkies hanging around the house all the time.

And yet, that was home and this was his situation.

Jon Swain: She said “We’re poor. We’re not getting any help from anyone else. Is it ok if I sell drugs just for a few months, to get us out of this hole?

Morrison: She is asking her 11-year-old son for permission to sell drugs from your home?

Jon Swain: I just said, “If things are that bad and that’s what you have to do, then that’s what you have to do and I love you.” You know? And I’m ashamed of myself.

Morrison: You were a little kid.

Jon Swain: I know.

Morrison: How can you be ashamed of yourself?

Jon Swain: It’s probably the only thing I look back on and I regret.

Morrison: But wait a minute… you’re 11 years old!

Jon Swain: Right. Yeah, I was only 11 years old. So what can I expect? But I always felt like the protector of my mom and I felt like I didn’t protect her when I did that.

A young child on the verge of death had become his mother’s parent— her nurse, as she flirted with the fatal dangers of her addiction.

Jon Swain: My mom had overdosed and I remember giving her vinegar so she would throw up, so she wouldn’t die and like sticking my finger in her mouth so she would puke. And that was horrible. I think about it and it just hurt.

Jonathan's poem 'I ain't got time for that' Everyday feels like the last day each day becomes a new life My friends fight, my mom fights I ain't got time for that. Druggies are thinking of themselves more than those around them Alcoholics are no different I ain't got time for that. People are getting infected by having reckless lifestyle they haven't a clue what AIDS is like I ain't got time for that. Mothers and children are separated because of alcohol and drugs precious time being wasted I ain't got time for that —Jonathan Swain, 13 years old November 26, 1996

But in public, Jon revealed no trace of his suffering. Occasionally he and his mother still gave speeches together, and he still attended school... but was afraid to breathe a word of the ugly truth.

Jon Swain: I mean, I couldn’t go in to my teacher and say, “Hey, listen, I live in a crack house. My life is horrible. I have AIDS. I’m sick every day". I knew I would lose my mom. And I didn’t want that. I wanted to be with my mom.

Jon Swain, neglected and depressed, gave up. He stopped taking his AIDS medication. For all those years he had hoped, but now, he didn’t anymore.

Jon Swain: I just said, “Man, I can’t do this.” I was so scared. I was so alone.

But Jon says it felt strange. He wasn’t used to just giving up.

Jon Swain: I said, “You’re telling everyone else you’re not gonna die, but you need to believe it yourself. You need to do something.”

And that’s when a name came into his head: The one adult he could trust.

Neil Willenson, founder of Camp Heartland: It was clear that Jonathan was suffering the worst family dysfunction I had ever heard of.

Neil Willenson, the founder of Camp Heartland, who’d bonded with Jon through all the speeches they’d given together, answered the phone at one o’clock in the morning.

Willenson: He kept asking, “Can I live with you? Can I live with you?”

Jon Swain: I said, “I know you don’t know me.” I said, “I know I’m just some kid from your camp. And I know how bad it would look but I have nothing else. I have nothing.”

Neil knew the one thing Jon needed was a stable home. He’d made it his life’s mission to help children with AIDS and here was a real opportunity to make a difference. He said yes.

Courtesy Neil Willenson Neil Willenson, left, and Jonathan

Willenson: I told Jonathan you can come out to live with me here in Milwaukee for two months as long as your mom makes a pledge to use those two months to get clean and sober and then to come and move to Milwaukee, Wisconsin. She made that commitment.

A junkie’s habit is hard to break. Two months turned into two long years.

In mid-1998, Sheila had finally kicked it- no more drugs and a stable job. She had moved to Milwaukee to be near her son in whom her interest was once again insatiable. Jon told Neil she was “mom” again.

Then one day, when Jon was 16, the past caught up. In October 1999, Sheila answered the door to a dozen FBI agents with an arrest warrant for her drug dealing days in Iowa. She could do nothing but plead guilty, she was guilty. In a lifetime of bad days Jon called sentencing day the worst.

It was hard that day to face his mom.

Jon Swain: My whole life I’ve always attacked problems and I’ve always been able to muster up the strength to say, “You know what, I can do this.”  That morning I woke up and it was a morning where I didn’t want to do it. I didn’t want to show up for the fight.  I was crying. I just told her, “I can’t live like this. I can’t do this. The disappointment is just too much. I can’t deal with it anymore.”

Sheila Swain: I felt so bad that day. I mean, to see— because I was sober and clean - and to see the hurt I had caused my family, my kids... my son that needed me, you know.

Sheila Swain was sentenced to 12 years in prison. She’s an inmate at the federal correctional institution in Dublin, California, reflecting on the mother she failed to be.

Morrison: Are you a strong person?

Sheila Swain: Uh-uh. I don’t think so. That’s one thing I’m not gonna say I am anymore, "strong."

Morrison: Because at the beginning you shouldered it all, you fought the battles.

Sheila Swain: And then I wimped out.

Morrison: How is it possible that hero mom could get to that place?

Sheila Swain: It’s ugly, isn’t it?

Sheila said she’ll now have to find that strength again, if only to overcome the sense of remorse and loss she struggles with every single day behind bars.

Morrison: This causes pain, doesn’t it?

Sheila Swain: (Crying) Yeah, it does.

If you think that’s where our story ends...with a crying and incarcerated mother and a devastated son... then you don’t know Jonathan Swain. To be alive longer than almost any other AIDS kid, he had come too far to just be satisfied with survival. Jon wanted more. He’d overcome the worst, and though he didn’t know it yet, the best was just around the corner in the unlikeliest of places.

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