He’s Out There
Most people who’ve spent more than a few nights in the hospital are familiar with the crushing weight of insomnia. I had sleeping issues before I was admitted. Now, halfway into my fourth month here, I’m as likely to be awake at 3 a.m., as I am to be asleep. Which is to say, what I call a decent night’s sleep nowadays is a few uninterrupted hours between 2:00— 6:00 a.m., when they wake me for meds, blood draw, etc. If I’m able to fall back to sleep, I might manage an hour of light sleep between 7:00 — 9:00 a.m. I take a sleep aid, but it seems less effective by the day.
On any given night, my brain won’t shut down and I am alone with my thoughts — often a sweaty vortex of work anxiety and transplant worries. I’ve come up with some techniques that are helpful. While they don’t always make me fall asleep, they help me relax, pass the time and get through the insomnia without making me crazy. I have a comfortable sleep mask with flat headphones. The thing is a lifesaver for insomniacs because you can listen comfortably to the wide variety of “sleep sounds” in the pitch black.
Most nights, I put on a “sleepcast” (wave sounds, river sounds, etc.). Given the number of available sleep sound apps, I’m clearly not alone in suffering from insomnia. Listening to them, I’m able to let my mind wander wherever it wants to go. Often, the sensation is linked to the audio I’m listening to. If it’s a rushing river sound, I visualize myself sitting on a boulder with green water rushing out of a pool and pine forests. If it’s a wave sound, I picture myself sitting on my surfboard out in the lineup. Rain on a rooftop might find me sitting by a fire in my grandparents’ old house upstate.
Lately, I’ve been listening to something called delta wave binaural beats. It might seem like kooky, third eye, chakra bullshit, but it is a godsend for insomniacs. There’s something undeniable about the way it makes me feel completely at ease, despite my inability to fall asleep. When I listen to these binaural beats, my mind sometimes feeds me stories about “my” donor.
The stories are often deeply detailed and visual, like waking dreams. I don’t know if it is a coping mechanism, but creating a backstory for the donor who, by dying, will (hopefully) give me the gift of a longer life, makes me feel less guilty about the fact that someone has to die for me to live. For a long time, my approach to the issue was to callously joke about it. I even wrote a goofy song called “Transplant Quarantine Blues”. The first verse goes like this: my heart’s busted and that is why/I need a big fucker, big fucker to die/maybe that’s morbid, but I ain’t gonna cry/cause I need a big fucker, big fucker to die. It could be a motorcycle/could be a train/however you go/I don’t wish you no pain.The song made me and others chuckle, but this dark humor approach to such an emotionally complex issue has its limits.
Most transplant recipients never learn the identity of their donor. Telling myself made up stories about the donor gives me background I will likely never get. I’m almost embarrassed by my obsessive thoughts about how the donor died. I started obsessing like this because of research I did while I considered joining a clinical study that could significantly reduce my wait time. One of the papers, an Australian study of the alternative organ procurement process that was the subject of the clinical trial, included data on the donor’s cause of death. In that study, traumatic brain injury was the most common cause of donor death, followed by hanging, and then various types of cerebral hemorrhage. That was ten years ago. In the United States, opioid overdose creates a large pool of donors. The causes of death form the basis of my waking dreams about my donor.
Chris was an offensive tackle at Rutgers. At 6'4 280, he was a little small for a tackle, but he was the starter in his last two years. He got a few looks from NFL teams, including his beloved Jets. In the end, probably because of his size, he was never signed. At age 28, he got into coaching. By 32, he was the head coach at a prestigious private high school in North Jersey with a reputation as a football factory. The team is nationally ranked and Chris is a great coach. He and his wife just had their second child; another daughter.
He was on his way home from practice and excited to see them when his car was t-boned by a driver who ran a red light. He was rushed to Bergen Medical Center, where he was placed in a medically induced coma. His uncle’s life was saved by a donated liver, so Chris always knew he would be a donor. Ultimately, it became clear that he would never again have cognitive function, and his wife, in keeping with his wishes, agreed to take him off life support and put his organs to use saving someone else’s life.
Pat was a tall, handsome man. After he graduated from NYU, he got an MBA and started killing it on Wall Street. He married a beautiful, Type A trader from another firm, who he met at a networking event. But, for the last ten years, his life was marked by failures. On his best days, he could joke about it. “What’s the opposite of the Midas touch?” he used to ask the regulars at Connolly’s. “Cause everything I touch turns to shit.” He had a moment, back in ’05, where it looked like he might be on the move. His wife still loved him. His kids didn’t think he was a loser, and he had lots of money. But, after an affair with “that whore at the diner,” as his wife referred to her, they got divorced, she got the kids, the house, and most of the money.
He was still doing OK until the market blew up in ’08. He lost his job, his portfolio went down the shitter, and he moved into the Garden Court apartments, referred to by most residents as the Divorce Court apartments. He had to cash out his 401k, and was just sort of limping along, doing not much of anything. He was working for an accounting firm to pay the rent, but shit was bleak for Pat. He was spending more and more time at Connolly’s joking with the regulars. He wouldn’t call them friends. He didn’t even know most of their last names, but he liked them well enough, and some of them could bullshit with him for hours. Then COVID hit, and he couldn’t even hang out with the regulars.
He was “working” from home when he got word that a lot of the non-partner accountants would be fired. He texted his ex-wife to tell her he was sorry and that “you won’t have to worry about me any more.” He finished off the bottle of bourbon, stepped onto a stool, tied a length of clothes line around the hot water pipe, and stepped off the stool. His wife, concerned enough by the text to call him, finally rushed to the Divorce Court apartments. His face was purple and his eyes bulged out of his head, but he had the faintest heart beat. She cut him down and thought to herself, “Jesus Christ, he couldn’t even do this right.” The EMTs said he was alive, but the length of time without oxygen probably meant he was brain dead. They were right. She was sitting in the waiting room, when a doctor approached and asked if she might be willing to donate Pat’s organs, as they could save a lot of lives. “Might as well,” she said. “It’s about time he did something for someone besides himself.”
Dave was a painting contractor. He had a solid business for a 28 year old, with a mix of residential and commercial clients, a crew of talented painters, a nice rig. He liked his life. He hadn’t gone to college, but had a good sense for business. He was affable and charming. Then, he fell off his ladder and broke his back. They told him he would get better, and he sort of did. He could walk around work sites and was able to keep the business going, even though he couldn’t paint. But the oxycontin he took to manage his pain became a constant need. Once a day, at first, then twice a day. Eventually his doctor cut him off and suggested he go to treatment. “I’m not a ‘treatment’ guy” he said to the doctor. “I’ve got this.” He didn't “got this.”
In what has become a stock story of the opioid crisis, he started buying the pills from a dealer. They were so expensive though. He sold his business to one of his crew leaders, sold his truck, and went on disability. He burned through that money in two years. He was still getting his disability check when he started buying heroin. He lived in a small rented space in a basement near Clara Maas Hospital, and would take the city subway from Belleville, to Newark, where he could buy heroin on the street. A short walk from Penn Station, there were a few regular dealers who came to know him. “Yo, Dave!!!” They always acted so happy to see him. He never sat with the junkies who shot up under the tracks. He’d get back to the apartment and do his business in comfort.
On a recent trip, one of the dealers said he had some good shit, “totally primo, my man.” He bought a twenty dollar bag, enough for three rides, if he stretched it. He got home, prepped his works and shot up. He knew immediately something was wrong and called 911. By the time they arrived, he was unconscious. “Fucking junkies,” said the EMT, as he sprayed Narcan up his nose. It was too late. Dave had lost touch with his family, but Clara Maas had his mother’s number as an emergency contact. They called and told her that her son had OD’d and was on life support. She was immediately filled with grief, but not at all surprised. She’d known a year ago that he was probably lost for good. When the doctor asked her if she might be interested in donating his organs, she immediately said yes. She spent the next three hours in his room, crying. Finally, she left the room, told the doctors to remove the ventilator, and let him go in peace. She later heard that his kidneys, lungs, heart, and liver were all transplanted. It made her feel a little bit better to know that pieces of him were walking around, giving life.
I was telling my daughter about these waking dreams last week when she came to visit. “Sometimes I feel like there’s something wrong with me, do you think it’s weird that I do that?” I asked. “Not at all!” she said. “You’re stuck in here for months. You’ve been waiting almost three years for a heart. I think it would be weird if you DIDN’T.” Pretty smart, that kid. As we were talking, there was a knock on my door. A transplant recipient I’d met while waiting came into the room. He was in for a “tune up.” They had to shock him out of an irregular rhythm. Not a big deal, but it required inpatient treatment.
Mr. Hooper, he goes by “Hoop,” is a big guy with a long beard. We hit it off immediately. He lives upstate near where my grandpa and grandma lived, so there was an instant connection. He is 60 years old and ten years post-transplant, which means he got his heart at 50, the same age I am today. He walked into the room and I introduced him to my daughter. “Your dad is very strong,” he told her.
Hoop had tears in his eyes and said, “I’m checking out today brother, but I just wanted you to know that everything is going to be good. You have a strong spirit. I can sense it. Before I leave, I just wanted to show you this picture.” He turned his phone around to show me a picture of a good looking young man, he had a wry smile, glasses and closely trimmed beard. Hoop explained through his tears, “most people never meet their donor’s family, but I was fortunate. He was 28, had a new family, and his mother wanted him to live on in someone else. I’ve been given an incredible gift, Andrew. You’ll get one, too. Cherish it and pay it forward.” My daughter and I were now also in tears. Hoop left and we looked at each other in disbelief. It seemed crazy, given the conversation we just had about my strange need to create stories about who might ultimately donate a heart for me.
It’s Saturday. Even though I’m stable and relatively comfortable, I hate it here. I’ve been here so long. The food is terrible. My back hurts from the shitty bed. I can’t stand the way it smells. All the people, doctors, nurses, staff, are all wonderful, which makes me feel even worse about complaining. But it’s Saturday, and Laura is here, and it’s the best part of the week for me. She is cutting my hair when there comes a knock on the door. “Come on in,” I say. It’s the attending heart failure doctor. I’m a little confused, because I’d just seen him on his rounds a few hours earlier. I’m very fond of this particular doctor. He’s funny and engaging. He tolerates all my stupid questions. I introduce him to Laura, who is standing in a pile of my hair with scissors in hand. “I’ve heard so much about you,” he says. “Your timing is excellent, because we’ve found a suitable donor. If all goes well, you’ll be in the OR at around two or three in the morning. It should take about five or six hours, and you’ll be in the CTICU tomorrow afternoon.”
I’m not sure, but I think I said “no fucking way.” My immediate reaction was shock, then elation, and now, hours later, I am so anxious I have to take a Xanax. Who’s my donor? It doesn’t matter. I’m not even sure I want to know. In some ways, I’m more comfortable with my imagined donors. But one thing I know for sure is that Hoop was right. This is an incredible gift. If all goes well, I’ll come out the other side not only with a new heart, but a new appreciation for, well, everything. I don’t know how yet, but I’m going to pay it forward.