About four years ago, I donated my kidney to someone I didn’t know. Today I work in the transplant field for a living, so being a donor comes up a lot. It’s basically the first thing most people find out about me.
Which I really hate, to be honest: I don’t like seeming different, like people assume I’m some sort of saint. That’s not how I see myself. It’s not how I want others to see me.
On top of that, every time someone asks me why I donated (which is always), I never really know what to say.
It’s not that I lack for explanations. I’ve dissected my decision to death. The explanations I give tend towards the clinical—causal factors explicating my aberrant behavior. I’d had anesthesia before; I overemphasize abstract reasoning and principles; I went to Catholic school; I have a savior complex, etc.
That doesn’t include the jokes I tell because explaining makes me nervous: “I was a corporate lawyer and wanted the time off.”
But that just list traits like I’m talking about someone other than myself. Mix that with the humor, and it’s just a way to pretend I’m in the same spot as my interrogator: “I know it’s weird too.”
That hides the way I really feel about it, hides my earnestness. I gave because if I didn’t someone would die. None of my other reasons matter.
It didn’t need to be my responsibility. No one’s ever obligated to be a kidney donor, to anyone, for any reason. I chose to take that on myself.
For most donors, giving a kidney fulfills a need closer to home – saving the life of someone they care about. But there too, I think an essential step is to assume a responsibility that you have every right to walk away from—choosing to voluntarily burden yourself with the needs of another; choosing to answer that need by sacrificing of your own body.
We live in a transactional culture where we’re told always to put yourself first. Don’t take on burdens that aren’t yours. No one’s entitled to your help. Look out for number one.
That makes discussions about giving an organ really difficult. It feels like people often take living donation as an indictment of their own choices—if you don’t know whether you’d give a piece of yourself to save a friend’s life, does that make you a bad person?
Of course not. No one needs to take on obligations that aren’t theirs. But, for me, the choice to accept responsibility enlarged my own life, made it richer with purpose. Becoming a kidney donor was the best decision I ever made. It made me happier than anything else I’ve done in my life.
I’d wanted to donate for years. When I finally did, it felt like running my first half-marathon or graduating from law school. It was an achievement I’d deliberately planned and had to work to make happen, like summiting my personal Mt. Everest. I had gotten the chance to live out the best version of myself.
For many people, donation only deepens their sense of self—confirms the potential they knew they had all along. Many see it in practical terms: when someone I cared about was in need, I merely answered the call. They go back to their lives feeling joyous but largely unchanged.
That’s not what it was like for me. The experience turned out to be addictive. I had been working in a job that meant nothing to me besides the paycheck. Suddenly I felt drawn to a higher calling, though I didn’t yet know that meant working to end the transplant shortage. When I donated, I had set my mind and accomplished something profound. Now that I knew I had that power, I couldn’t just go back to the compromises I’d been making.
The road to where I’ve ended up was a long one. I tried to be a writer and failed at it. I left my home and the woman I lived with to start a new career in Toledo, Ohio. (I didn’t know anyone within two hundred miles). I received a grant, came back to the east coast, and started Waitlist Zero.
Ending the kidney shortage is my life. It wasn’t when I donated, but the same feelings that made me a donor then make me want to find everyone a donor now. The same things that make me uncomfortable telling my story as a donor keep me from speaking on my passion for Waitlist Zero.
Waitlist Zero means finding a transplant for everyone who needs one. It means that access to medical care shouldn’t be contingent on your skin color or your health insurance or how many friends you happen to have or how healthy they happen to be. It means that no one should ever have to feel the loneliness of wondering if anyone cares about you enough to save your life. It means tens of thousands of families each year shouldn’t have to go to someone’s funeral and wonder if they could have done more.
I wish I could say that this passion for ending the shortage was broadly shared but it’s not—for the simple reason that most people in the field don’t believe it’s even possible. Doctors are passionate about caring for their patients—incredibly passionate. But for decades the shortage has been growing and growing and the number of transplants has just stayed the same.
It gets tiring to hit your head against the same wall; after a while you forget that anything better exists. It’s hard to expect faith in the possibility for change.
But I do have that faith. It’s what sustains me through the travails of starting a new business and feeling sometimes like I’m making every possible mistake along the way. And I could give a dozen reasons why ending the shortage is possible: how living donation saves the government hundreds of thousands of dollars per patient; how studies show educating patients and their families can nearly double the rate of living donation; how if only one in ten thousand Americans donated each year, there’d no longer be a shortage.
Right now, six in seven people who need a transplant can’t find a living donor—I refuse to accept that six in seven Americans don’t have someone able and willing to save their life if only our community did a better job of supporting donation.
Yet those are just rational reasons. Ending the shortage is a transformational change: something more is needed than mere logical deduction. Otherwise it would have happened already.
What drives me to keep going is less rational certainty than the conviction that the field needs at least one person who believes the shortage can be defeated—the hundred thousand patients on the waiting list deserve champions who refuse to accept their deaths as inevitable. And we deserve a community where people take responsibility when they don’t strictly have to, a community that supports transplant and never lets die somebody who only needs a willing donor to live..
Well written moving piece. Donating altruistically 15 mo ago I feel like I want to do more. You have and that is inspiring.
This says it all Josh–and belies your belief that you’re a failed writer. What you say is right on target. 85% of donors decide with their hearts. Right too that the majority of people who learn you’re a donor apply it to themselves, a dipstick for their own compassion, like adopting a challenged child. We who benefit from WLZ’s work and all those who do but don’t know: we’re glad you find living donation addictive!