Life in Research, ECR Hub

When the Scientist Becomes the Patient

Zhong-Lin Lu is Professor of Neural Science and Psychology at NYU Shanghai and NYU. A vision scientist and longtime mentor, he is writing A Life in Progress while navigating kidney disease, transplant evaluation, and the search for a living donor.

I have spent most of my life believing that difficult problems can be approached by asking the right questions, gathering the right evidence, and working with the right people.

Then I developed Stage 5 kidney disease.

For the first time, the most urgent problem before me was one I could not solve myself.

As a scientist, I am accustomed to uncertainty. Experiments fail. Hypotheses change. Papers are rejected. We revise our ideas and try again.

Medical uncertainty feels different when the experiment is your own life.

My transplant center is in New York, but I was living in Naples, Florida, while completing much of my evaluation. I was new to Naples and had to establish local medical care, including finding a cardiologist at the Rooney Heart Institute.

Over several weeks, I completed blood tests, imaging, cancer screenings, vaccinations, and a nuclear stress test, while making sure the results reached my transplant team in New York.

What made this complicated process manageable was the extraordinary group of people caring for me in both places. At NYU Langone, physicians, nurses, coordinators, and administrative staff in Nephrology and the Transplant Institute guided me through each stage. In Naples, doctors, nurses, technicians, and administrators helped me establish care quickly and complete what was needed far from my transplant center.

As a patient, I began to appreciate how much good medicine depends on teams. The physician may be the person we remember most easily, but excellent care also depends on nurses who answer questions, coordinators who keep track of records, technicians who perform tests, and administrators who make a complicated system work.

I believe I have now completed the required testing, and I am waiting for the transplant center’s decision about whether I will be placed on the deceased-donor kidney waitlist. At the same time, I am searching for a living kidney donor through the National Kidney Registry.

For someone accustomed to designing experiments and making decisions, waiting has become its own education.

A different kind of journey

At almost exactly the same time, I began another journey.

I had started writing a memoir, A Life in Progress, and posting it chapter by chapter on LinkedIn. As I wrote, I found myself returning again and again to the people who had shaped my life: teachers who opened doors, mentors who believed in me, collaborators who made discoveries possible, and students who taught me in return.

I thought I was writing about my past.

I did not realize that I was preparing myself for what I would soon have to do next: ask other people for help.

When I created a National Kidney Registry microsite to search for a living kidney donor, I shared it personally with about 150 friends and colleagues. Many responded with remarkable kindness. Some reposted my story on social media or circulated it through professional listservs. ARVO, one of my professional organizations, allowed me to share it in its community forum. I also reached out through LinkedIn and the alumni communities of universities where I had studied, taught, and worked.

For decades, I had built what I thought of as a professional network.

Suddenly, I saw something else.

It was a human network.

Learning to ask

Asking publicly for a kidney did not come naturally to me.

Throughout my career, I had been much more accustomed to helping students, colleagues, and institutions than asking others to help save my life. Scientists are also trained to value independence. We develop our own ideas, lead projects, and are often evaluated on our ability to stand on our own.

But independence has limits.

No scientific career is actually built alone. Every career depends on teachers, mentors, collaborators, students, technicians, administrators, families, and friends. My medical experience has reminded me that the same is true of health care.

Illness made that interdependence impossible for me to overlook.

There is an enormous difference between asking someone to read a manuscript and asking the world whether someone might consider giving you an organ.

Writing my memoir unexpectedly prepared me for that moment. It taught me how to look back honestly, explain what my life has meant to me, and tell others why I hope to continue it.

Scientists become very good at writing about results while removing ourselves from the story. We describe what was measured, what was observed, and what conclusions the evidence supports.

This time, I had to put myself back into the story.

What I would tell younger researchers

If there is one lesson I would share with early-career researchers, it is this: do not confuse independence with isolation.

Do excellent science. Develop your own ideas. Learn to defend them.

But also invest in people.

A mentor is not merely someone who helps you publish a paper. A collaborator is not simply a name on an author list. A student is not someone who merely passes through your laboratory. The relationships surrounding our work may ultimately matter as much as the milestones we spend so much time pursuing.

And perhaps we should become more comfortable asking for help.

Research teaches persistence, skepticism, curiosity, and resilience. But a life in research can teach something else as well: there are problems we cannot solve alone.

Recognizing that is not a failure of independence. It is part of being human.

Still in progress

My story does not yet have an ending.

I am still waiting for the transplant center’s decision about the deceased-donor waitlist. At the same time, I am still searching for a living kidney donor. I am still doing research, working with colleagues and students, and writing my memoir.

When I chose the title A Life in Progress, I thought I was describing a memoir—a progress report on nearly six decades of life.

I understand the title differently now.

The life really is still in progress.

I do not know what the next chapter will be. But I have learned that sometimes moving forward depends not on solving the problem yourself, but on allowing other people to become part of the solution.