Kyle johnson for reader's digest
First told at a show by the Moth, the live storytelling group, at the Neptune Theatre in Seattle
[dropcap]I[/dropcap] was 23 years old when I had my first child. I was in labor for three days before my son, RJ, was born. So when I first laid eyes on him, I felt nothing but exhaustion. I said, “This is it?”
It wasn’t until about an hour later, when I woke up and he was in my arms, wrapped up, that I felt it—that rush of maternal love, that primal adoration.
And I thought, This is it. This is how the species survives.
Two years later, I had another child, a daughter, Emma. And soon after Emma was born, their father and I divorced. He moved to Europe, and I raised the kids by myself.
Fast-forward. We’re living in Seattle. The kids are in high school and doing great. They get straight A’s.
The only thing RJ gets in trouble for is his hair, because he goes to Catholic school. But RJ plays the drums, he’s in theater, so he wears his hair long.
In the fall of his junior year, he’s cast as the lead in the school play. He’s going to be Atticus Finch in To Kill a Mockingbird, so he has to get his hair cut.
And I remember him walking out of the barbershop. He had a crew cut, and he was six feet tall and impossibly handsome.
He had this shy smile, and I thought, This is the man he is becoming.
A few months later, in January, a cop showed up at our door, and he said, “Are you RJ’s mom?”
I said yes.
He said, “There’s been an accident.”
I said, “Is he dead?”
courtesy stephanie peirolo
[pullquote]A cop showed up at our door and said, “Are you RJ’s mom? There’s been an accident.”[/pullquote]
And he said, “Not yet, but we have to get to the hospital right away.”
So the cop drove me to Harborview Medical Center, the region’s Level 1 trauma center. We went in the back way, by the ambulance bays. Someone was hosing blood out of the back of an ambulance, all of this blood, and I remember thinking, That’s my son’s.
[pullquote]Someone was hosing blood out of the back of an ambulance, all of this blood, and I remember thinking, That’s my son’s.[/pullquote]
It took a couple of hours for me to find out what had happened. RJ had been driving to his best friend Cole’s house. He had his seat belt on. He didn’t have drugs or alcohol in his system. He was blindsided by another car in an intersection.
RJ sustained a traumatic brain injury, or TBI, a number of broken bones, and a fractured pelvis.
I was working for a global advertising firm that had a self-funded insurance plan, which was administered by a major insurance company.
Keep in mind, it’s the first week of January. So I didn’t have a list of my benefits, what’s called a summary plan description. What I had was an insurance card with a phone number on it.
So while RJ was in the ICU, I called customer service at the insurance company, and the voice on the other end of the phone told me, “ICU is covered, intensive brain-injury rehab is covered, skilled nursing facility …” And they listed all these great benefits.
And I remember thinking, Thank God I don’t have to worry about insurance. I’m the vice president of a company. I’ve done everything right.
When RJ was discharged from the ICU after three weeks, he was transferred to a rehab facility. After he got there, they called me on the phone and said, “Your insurance company called and said RJ’s rehab benefits are up on Friday.”
I said, “No, no, no, no. That’s covered. I was told by my insurance company that this facility is covered for at least 60 days and possibly more. We have more time.”
[dropcap]B[/dropcap]ut all I had was a voice on the phone. Without written proof, without the summary plan description, I couldn’t prove it. So when the rehab facility got another call from my insurance telling them these benefits had lapsed and I couldn’t prove otherwise, I went to the facility and I asked, “Where am I supposed to take him? He’s in a coma.” I remember a social worker telling me I could look into foster care.
So Emma and I took RJ home. My friends swarmed over the house to make it wheelchair accessible, building a ramp and reframing doors. We made a hospital room in his bedroom. He had a percutaneous endoscopic gastrostomy (PEG) tube inserted through his abdominal wall in his stomach, and that’s how we pumped in nutrition.
Before he left the facility, they taught us how to do physical therapy and how to administer medication around the clock. Emma was 15, and she said, “Mom, I will help you take care of RJ in any way I can, as long as it doesn’t involve the Speedo zone.”
So when he needed to be changed, because of course he was in diapers, she would bring me a bucket of warm water and washcloths, and I would clean him up.
[dropcap]C[/dropcap]oming out of a coma is nothing like what you see in the movies. It’s a long, slow, painstaking process. It took RJ months to learn how to hold up his head in a seated position. We would put him in his wheelchair, and his friends would come by every day after school. The girls took to showing up in short skirts and fishnet stockings. They would walk in front of the wheelchair—and RJ would lift up his head.
Months passed, and I still couldn’t get the summary plan description. I kept calling my insurance company, and they’d be telling me my benefits, and I’d say, “You’re giving me information that you’re looking at. Give me, like, a screen grab of your computer screen.” But they wouldn’t do it. They kept telling me it was being “revised.”
I did some research, and I found out that under a law called ERISA—the Employee Retirement Income Security Act of 1974—I was entitled to the details of my insurance policy.
So I called an ERISA lawyer and told him the situation, and he said, “I can help you, but you’re going to have to give me a retainer of $30,000.”
I said, “Let me be clear. I’m a single parent. I have paid $15,000 to set up a hospital room in my house and pay a nurse to sit with my son so that I can go to my job, so that I stay employed, so I can keep this insurance. I don’t have $30,000.” I had run out of money. I could barely afford to care for my son.
And he said, “I’m sorry; I can’t help you.” It was five months before I could get a copy of my summary plan description. We never lost our insurance. I just couldn’t get RJ some essential services unless I could prove those services were covered.
At this point, a year after RJ’s accident, I was completely exhausted. There is a particular cruelty to having to spend 10 to 15 hours a week fighting your insurer for benefits while you are caring for a child in a coma around the clock. I was also concerned about getting fired, because I’d taken so much time off to care for RJ. So I applied for and was granted FMLA leave. The Family Medical Leave Act says you can take 12 weeks of unpaid leave to care for a sick relative. Shortly after I filed for FMLA, I was terminated in what my employer said was a downsizing.
[dropcap]W[/dropcap]hen RJ turned 18, a little over a year after the accident, he qualified for Medicaid, which paid for the full-time nursing home our insurer wouldn’t cover. I found a facility that specialized in patients with traumatic brain injuries. All its patients were on Medicaid, so the place didn’t have much money. But the staff took really good care of RJ, and he continued to make slow progress. He could do thumbs-up for yes, thumbs-down for no. Once, we were visiting him, and Emma started teasing him, and he flipped her off. I got really excited because that requires manual dexterity I didn’t know he had. And then he turned to me and he put his hand down because, brain injury notwithstanding, he was not about to flip off his mother.
Before RJ’s accident, I had to drag him to Mass on Sundays, but after the accident, he loved to go to church.
I’d say, “Do you want to go to Mass today?” He’d put his thumbs up.
He learned how to put money in the collection plate again. And when he learned how to swallow—that took a year to come back, because apparently swallowing is incredibly complex—he could take Communion, and you could see it provided him so much solace.
In August of 2005, RJ got very sick with what we thought was a bad case of the flu. It turned out to be something else entirely.
RJ still had his PEG tube in his stomach for the times when he couldn’t swallow well, and one day it had fallen out of his abdomen. That happens, and when it falls out, it needs to be replaced. RJ’s was, but it turns out that his food had been going into his abdominal cavity rather than his stomach. He developed sepsis. At the hospital, the surgeon took me aside and said, “I can operate on RJ, and I might save his life, but he’s going to go back into a deep coma, and he will never come out. Or you can let him go.”
So I went down the hall and called his father, who was still in Europe, and I said, “What should I do?”
He said sadly, “You’re caring for him; it’s your choice.”
So I went into RJ’s room. He was completely aware of what was happening, and he was afraid. His eyes were open really wide.
And I said, “Honey, you’re very sick, and they can’t help you. So you’re gonna go to God.” I tried to think of who he knew that had already died, but he was 19. So I thought of my dad, who had died before RJ was born, and I said, “RJ, you’re gonna go to God, but my dad is there, and he’s gonna come and find you, and I will be there soon.”
courtesy stephanie peiroloI could see him trying to make sense of it. For two years, I had watched RJ’s comprehension wax and wane. Even gravely damaged TBI patients sometimes have moments of lucidity, and this was one of those moments. He was right there, looking at me, listening to me, trying to understand that his mother, who never lied to him, was telling him he was going to die. Trying to understand what death meant, what was going to happen next. I channeled every bit of the centuries of Catholicism in our shared DNA to give us both the faith that there was something on the other side.
[pullquote]It took RJ three days to die. It took him three days to come into the world, and three days to leave it.[/pullquote]
The priest came and gave him the last rites. He was from Nigeria, and he sang a lullaby in his native language, and RJ closed his eyes. One moment he was there, unconscious, heavily medicated against the pain. And then he was gone. The nurse checked his pulse and told me he was dead. But I already knew. The boy I had given birth to, loved and cared for, laughed with and celebrated, was out of his body. He wasn’t there anymore.
[dropcap]P[dropcap]eople ask us how we coped. Emma is now an RN who works in an emergency room that is a trauma center.
After watching my experience with RJ, one of my friends decided to leave advertising and go to law school. She’s a cancer survivor who’d had her own challenges with insurance companies. We formed a group to help people who are fighting for insurance benefits to which they are entitled. It’s called the Health Care Rights Initiative (hcri.org). We take legal action to help people in situations like mine and RJ’s. With all the changes expected to the health-care and insurance landscapes, we’re expanding to get more volunteers and enough donations to provide services across the country.
RJ would be 31 years old now. I still have that strong maternal love for him. The challenge now is to channel it, so it doesn’t become corrosive. So that I don’t say things to myself like, Why didn’t you keep him at home? Or: If you had made more money, you could’ve afforded to put him in a private nursing home with the right equipment, and then he never would’ve died.
Most days I wake up and the world is so diminished without him in it, it’s like there’s been a total eclipse of the sun. I’m the only one who can see it, and I know the light is never coming back.
But there are days when I wonder if RJ’s existence isn’t part of a larger narrative arc than I can understand. If maybe this slice in time was how RJ had to work out his destiny, and maybe my job was to walk with him.
[pullquote]I wonder if RJ’s existence wasn’t part of a larger narrative, if this was how he had to work out his destiny.[/pullquote]
Between RJ’s accident and his death, he wasn’t able to speak; he was only able to say a handful of words. And the word he said most was Mom.
There are times now when I feel RJ. I feel that he is. And in those moments, I know it’s his turn for his love to carry me.
Stephanie Peirolo is executive director of the board of the Health Care Rights Initiative, a nonprofit providing advocacy and navigation services for patients and caregivers. This story was excerpted from All These Wonders.
Matthew Cohen for Reader's Digest