Read Tonic's organ donation coverage here.
One of the hardest conversations I've ever had took place in the fall of 2001. I was with my family in the intensive care unit of Riddle Memorial Hospital, about an hour outside of Philadelphia, near where I'd grown up. The night before, my mother had experienced a sudden brain aneurysm, and by the time I'd made it back from college to see her, she was unresponsive, dependent on a respirator to breathe. The doctors had just told us—in a somewhat coded, careful manner—that the latest brain scan didn't look promising.
That was around the same time a counselor from the local organ donation service approached my father and grandmother and asked—as cautiously and delicately as possible—if she could have a few minutes of our time. We knew, more or less, what the conversation was going to be about: The sooner we made a decision regarding whether or not to continue life support, the greater the likelihood that my mom could potentially help save someone's life.
My mom had always been proud of being an organ donor, and encouraged us to follow her lead. When I turned 16 and got my driver's license, I signed up. So did my sister. Giving back, helping people—it all came naturally to her, an elementary school nurse who had started her career in the burn unit of Abington hospital, tending to some of the most severe cases.
With what now seems like a grim kind of foresight, she'd made a point of telling us—repeatedly—over the years that being tethered to some hissing, beeping instrument panel in order to survive was no way she wanted to live. And if it ever came to that, she wanted us to know what to do. That morning, after listening to the prognosis from her doctors, we decided to respect her wishes.
Growing up with somebody who believed so deeply in the importance of being a donor skewed my idea of how people thought about this issue; I was surprised, years later, when I learned just how divided people are. While the vast majority of Americans—90 percent—support the act of organ donation, fewer than half of us have actually signed up to be donors ourselves, according to data from the Department of Health and Human Services.
The result is a shortage of epidemic proportions: At any given time, roughly 119,000 people are waiting on a potentially life-saving transplant. In some ways, it's just another example of how our healthcare system seems—almost by design—to neglect the needs of the sick and most vulnerable. In April, we asked writer Nick Keppler to speak with people who were waiting on a transplant. What they described was a nightmare of stress and uncertainty: We heard from Brianne, 28, dealing with a rare kidney disease. "Every time the phone rings, I'm anxious," she said. "My whole life is up in the air."
Dashia McLeod, 30, echoed a similar feeling: She'd been waiting more than three years for a heart transplant. All the things it's normal for a woman of her age to desire—getting married, seeing more of the world—were on hold indefinitely. "I wouldn't want to leave while I'm waiting for something far more important," she said. "I've sacrificed too much. I've waited too long."
For the counselors tasked with convincing people to sign up, however, there are no easy arguments or universal talking points. The reasons people choose not to give are often deeply personal—bound up in long-held religious beliefs, for instance, or rooted in resentment and distrust of the medical establishment, as writer Patia Brathwaite reports in Why Black People Don't Want to Donate Their Organs.
No one story could possibly capture all of the tension, discomfort, and confusion at the core of the organ donation dilemma. That's part of the reason why Tonic has decided to focus on exploring every angle we can find—from the political to the personal. This week, we'll be republishing a few of our favorite stories that we've done so far (you can find most of them here) and adding a bunch of new perspectives, too.
Our goal, as always, is to show the human side of this issue—all while trying to relieve some of the fear and anxiety people still feel about donating. It's not just about hearts and livers being dropped into coolers and shoved into the back of ambulances. There are smaller, quieter ways, too, that being a donor can make a big impact on someone's life. Last week, I called Gift of Life, the organization that handled my mother's case, to find out what had happened after she died. They connected me with a counselor, Carla, who after some back-and-forth was able to pull my mother's records. By the time she'd died, I learned, it was too late to recover any of my mom's vital organs—the reasons why weren't entirely clear. But it wasn't a lost cause, either, Carla added—the record showed that they were still able to recover a single, healthy cornea.
Carla couldn't share the name of the recipient, but she could tell me that, at the time, she was an 84-year-old woman who lived in Delaware, likely blind from macular degeneration. Thanks to a decision my mother had made many years earlier, there was now a good chance that she was able to see.
Becoming a donor takes minutes and can be done on your phone. Click here to find out how.
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