Stephanie Peirolo - Walking With RJ

 

 

I 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. And I said, this is it. It wasn't until about an hour later, I woke up and he was in my arms, wrapped up and I felt it, that rush of maternal love, that primal adoration. And I thought, this is it. This is how the species survives. 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 both in high school and they're doing great. They get straight A's.

 

The only time RJ gets in trouble is because he wears his hair long and he goes to Catholic school, and you're supposed to have your hair above your collar. 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 barber shop, and he had a crew cut, and he was six feet tall and impossibly handsome, and he had this shy smile. And I thought, this is the man he is becoming.

 

In January of his junior year, that's 2003, a cop showed up at our door, and he said, “Are you RJ's mom?” And I said, “Yes.” And he said, “There's been an accident.” And I said, “Is he dead?” And he said, “Not yet, but we have to get to the hospital right away.” So, the cop drove me to Harborview, which is not the closest hospital to our house, but it is the one with a trauma center. And we went in the back way, where the ambulance bays are, and someone was hosing blood out of the back of the ambulance. All of this blood. And I remember thinking, that's my son's. And we walked in, and I saw RJ being wheeled away on a gurney, just for a second, but I recognized his haircut. 

 

It took a couple hours for me to find out what had happened. RJ had been driving to his best friend's. He had his seatbelt on. He didn't have any drugs or alcohol in his system, and he was hit from the side in a blind intersection. He sustained a traumatic brain injury, or TBI, a number of broken bones, and he had broken his pelvis. And at the time, I didn't understand the gravity of a TBI, so I was worried about his pelvis. At the time, I was the vice president of an advertising agency that was owned by a global conglomerate of advertising agencies, and they had just changed their insurance plan. Keep in mind, it's the first week of January, so I don't have a list of my benefits. What's called a summary plan description. What I have is a card with a phone number on the back. 

 

So, while RJ is in ICU, I make the phone call, and the voice on the other end of the phone tells me “ICU is covered, Intensive brain injury rehab is covered, skilled nursing facility,” and they list off all these great benefits. And I remember thinking, “Thank God I don't have to worry about insurance. I've done everything right. I'm the vice president of the company.” When RJ was discharged from ICU, he was transferred to the rehab facility. And shortly after he got there, they called me on the phone and they said, “Your insurance company called and said, RJ's benefits are up on Friday.” And I said, “No, no, no. He's got this many more benefits.” But of course, I just had a voice on the other end of the phone. I didn't have the summary plan description, and the facility had a different voice on the end of the phone.

 

And so I went over there and I said, “Where am I supposed to take him? He's in a coma.” And they said, “Well, there's always foster care.” So, Emma and I took RJ home. We made a hospital room in his bedroom. He had a PEG tube in his stomach, and that's how we pumped in nutrition. They taught us how to do physical therapy. 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.” [audience laughter] 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 put them by his door, and I would take them inside, close the door, and clean him up.

 

Coming 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'd put him in his wheelchair, and his friends would come by after school. His friends came by every day after school, and the girls took to showing up in short skirts and fishnet stockings, and they would walk in front of the wheelchair, and RJ would lift up his head. [audience laughter]

 

Months had passed, and I still couldn't get the summary plan description. I keep calling them, and they'd be on the phone and they'd telling me my benefits. And I said, “You're giving me information that you're looking at. Give me like a screen grab of the computer screen that you're looking at.” And they wouldn't do it. And I realized this is not a bureaucratic mix up. This is intentional and this is illegal. It turns out that this is a violation of a law called ERISA. 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.” And I said, “Let me be clear. I'm a single parent. I have paid to set up a hospital room in my house. I pay a nurse to sit with my son so that I can go to my job, so that I stay employed, so I can get this insurance. I don't have $30,000.” And he said, “I'm sorry, I can't help you.

 

At this point, I was completely exhausted, and I was very concerned about getting fired because I'd taken so much time off. So, I applied for and was granted FMLA leave. The Family Medical Leave Act says that you can take 12 weeks of unpaid leave to care for a sick family member, and they have to keep your job for you. Shortly into my FMLA leave, I was fired. These things are illegal, but you can't call the police on a corporation, and I couldn't afford an attorney.

 

When RJ turned 18, he was able to go on Medicaid, and I made the decision to put him into a nursing home. I found a facility that specialized in-patients with TBIs, and they had a lot of much younger population because there were a lot of young men who had been in motorcycle accidents. All their patients were on Medicaid, so they didn't have much money. But they took really good care of RJ and he continued to make slow progress. He could do thumbs up for yes, thumbs down for no. We were visiting him, and Emma was teasing him, and he flipped her off. And I got really excited because that's like some manual dexterity happening there, right? [audience laughter] 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. [audience chuckle]

 

Before RJ's accident, I had to drag him to mass on Sundays, but after the accident, he'd love 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 be able to put money in the collection plate again. And when he learned how to swallow, because apparently swallowing is incredibly complex, that took like, a year to come back. But when he could swallow, he could take communion, and you could see that it provided him so much solace. 

 

In August of 2005, RJ got very sick, and we thought it was the flu. It turned out he still had his PEG tube in and it had fallen out. And that happens, and when it falls out, you put it back in, and you're supposed to X-ray to make sure you have it in the right place. Well, this facility couldn't afford an X-ray machine, so they guessed, and they guessed wrong. His food had been going into his abdominal cavity, and he had sepsis. At the hospital, the surgeon took me aside and she 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. You have to decide.”

 

So, I went down the hall and I called his father, who was still in Europe, and I said, “What should I do?” And he said, “You're caring for him, it's your choice.” So, I went into RJ's room and RJ 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 fix you, so you're going to go to God.” And I tried to think of who he knew that had already died, but he was 19. So, I thought of my dad who died before RJ was born. And I said, “RJ, you're going to God, but my dad is there and he's going to come and find you. And I will be there soon.” It took RJ three days to die. It took him three days to come into the world and three days to leave it.

 

People ask us how we cope. Emma has been an EMT, a volunteer firefighter. She works in an emergency room that is a trauma center, and she's applying to nursing school. My friends saw what happened and they started a nonprofit to help people who are fighting with their insurance company for covered benefits, even if they don't have enough money for a retainer. I'm the chair of the board. We have ERISA lawyers and they are very good at what they do. RJ would be 27 years old. 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 have afforded to put him in a private nursing home and then he never would have 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, only I'm the only one that can see it. And I know the light is never coming back. But there are days where 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. Between the time of 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.” And there are times now where I feel RJ, I feel that he is. And in those moments, I know it's his turn for his love to carry me because I'm his mom. Thank you.