‘Because I Knew You’: OHSU pediatric physician’s memoir reveals how treating kids helped him heal

About 200 pages into Robert Macauley’s memoir, he takes up the big question of why God — if there is one — allows kids to suffer and die.

“The best answer I’ve come up with — with three graduate degrees in theology from places like Oxford and Yale, followed by three decades as a physician-priest—is…”

The next two pages are blank. This is what he writes next.

“In other words, I don’t know. I don’t know why God lets such terrible things happen, which even someone as tragically flawed as me would make absolutely sure to prevent, given a pinch of omnipotence and a nanosecond to act.”

Macauley deals with dying kids for a living. He’s a pediatrician at OHSU, and one of the few in the country certified in hospice and palliative care. He’s also an ordained Episcopal priest.

His new memoir is called “Because I Knew You: How Some Remarkable Sick Kids Healed A Doctor’s Soul.”

He spoke with OPB’s “All Things Considered” host Geoff Norcross.

Geoff Norcross: What do you mean when you call yourself tragically flawed?

Robert Macauley: What I mean is that when I was a child, I went through a lot. I was sexually abused as a child. In order to survive I developed soul calluses, and I also developed a distorted view of the world. When you’re a child and you are told essentially that terrible things are ok, you lose your own sense of right and wrong. And so coming out of that, I knew firsthand what it felt like to hurt as a child. I didn’t want any other child to feel that way.

Norcross: How did that history lead you to study medicine? And to study theology for that matter?

Macaulay: I wanted to help people somehow. I felt led both to medicine and ministry. I did a combined medical school-divinity school program, was ordained an Episcopal priest right around the time I graduated from medical school. And ever since, I have tried to balance those two things, sometimes a little one, a little of the other, and eventually finding my way to a place where I felt like I could do all the stuff that I felt called to do in one place.

Norcross: Do they ever not balance? Do the trainings ever find themselves at odds with each other?

Macauley: Rarely. Most of the time they are complementary. Doctors are fix-it people. That’s great in most cases, unless there’s a situation that can’t be fixed, and as a priest I entered into a lot of situations that could not be fixed. So I think I’m probably more comfortable in situations where presence and compassion are the things that are called for, rather than fixing something, which oftentimes occurs in palliative care.

Norcross: Your book has some incredible stories of kids that you treated and lost. Can you share one?

Macauley: One I come back to frequently is Grace. Grace was a teenager when I met her and had already been facing a very bad kind of cancer called neuroblastoma for many years. I worked with her for several years until finally we ran out of treatments, and it was clear that she didn’t have much time left.

One of her great dreams was to see Broadway. And some amazing people came forward — a nurse that she was working with, who happened to be a pilot, who enlisted a couple of her friends who were also pilots, who asked their boss of the corporation if they could borrow the corporate jet for the weekend. And then she went to see “Wicked”, got a backstage tour with the cast, and she was positively aglow after that. Then the pain set in. Her condition worsened. She was only home for a few hours before the pain got so bad she came back to the hospital, and she died the next day.

Everyone who faces serious illness, I believe, is a brave soul, and sometimes that illness is so profound that they, despite their best efforts, kind of fade away. Grace never faded away. She led her best life until the very end.

Norcross: Grace did live a life. She got to fulfill a few of her dreams. But you also have patients in your book who are babies, and their lives are measured in days, not years. How do you metabolize losing a baby?

Macaulay: It’s really hard. One of the things we try to do in my work is reframe what we hope for. Everybody hopes when their baby is born that that baby leads a happy, healthy life. They have every reason to hope for that. But there are situations where that’s not possible. So what we try to do is make every moment count and be very clear about acknowledging and naming how wrong that is. What we do is we sit with the injustice and we name and honor how much those parents love their child.

Norcross: Your work sounds enriching, it sounds important. But it also — at times — sounds excruciating to me. How do you keep going?

Macaulay: I’ll answer that in two ways. One is, yes, it is really hard, and the way I keep going is I lean on people. I have a wonderful family. I have some amazing friends. I work with an incredible and supportive team. And so when I’m not doing my best, there are people out there who can pick me up.

The other way I’ll answer it is that, coming from where I came from as a child, people did things that no one ever should. And I am incredibly blessed to find myself doing work where I encounter people who do things I didn’t think human beings even could in terms of bravery, in terms of generosity, in terms of opening your heart even though you know it’s going to break.

When I was finishing this book and trying to figure out what the end of it should be, it was only then that I realized what this book really is. It’s a thank you note. It’s a thank you note to the patients and their families that I have been privileged to help care for because they restored my faith in people, and showed me how good and brave people can be.