Tuesday, June 24, 2014

Art Class

This is a post I have long wanted to write, but I wasn't ready to give up the kind of personal details that lie herein. Over time, I've gotten much looser with such details, but this one is going to give a lot of people some super huge clues. Now let's see if I can make it through without crying.


There are a lot of standard tropes on Twitter. One common thread is the debate about the meaning of "passion" in science. People who talk of being "passionate" about their work are usually interpreted  in some corners as using exploitative code language. Often such people are derided for promoting an unhealthy work ethic or expecting too much of their staff or questioning their dedication. Let me tell you what passion means to me.

It is with all humility that I acknowledge the fact that some people have told me they find my story inspirational. Although I often fail, I try to keep my blog on balance positive. I think it's important to articulate the struggles associated with being a neuroscientist with P (or often really just a scientist), but I hope my regular readers recognize that my core philosophy and message is optimism.  If you want to hear my best articulation of that message, read the post entitled "Learned to Surf". That spirit has defined how I respond to my condition, but it didn't just drop out of nowhere. There are experiences I have not yet shared on my blog that have shaped me every bit as much as P. I want to talk about what inspires me. I want to talk about my postdoctoral mentor.


O Captain! My Captain! Rise up and hear the bells
Rise up—for you the flag is flung—for you the bugle trills

He was more than my hero. He was a hero to my heroes. In an era of awe-inspiring neuroscience tools, he is one of the most important forebearers. He was one of the first to say "What if we could...?" He developed many tools that people continue to use and also prefigured many current trendy methods. But where he truly distinguished himself was in his ability to boldly and creatively use those tools wisely to answer fundamental scientific questions. If he were here today, he would be having a blast.

My Captain does not answer, his lips are pale and still;
My father does not feel my arm, he has no pulse nor will;

The day he died, I was crushed that science would never be as fun again. My scientific world will always have a hole in his shape.


Welcome to art class
And yes it does involve shaking your ass

I first took notice of his papers as a young graduate student. They were so alive with creativity and daring and cleverness and joy that it literally jumped off the page. It is impossible to overstate how compelling I found his work. It was exactly the kind of science that I have always aspired to: science that expresses who you are as a person. I felt I knew exactly what he was like without ever having met him yet. I thought of him as equal parts artist and scientist. Being early in my thesis years, I filed that memory away because I knew it would become important later.

It did.

I had occasion to meet the man near the end of graduate school. Once I did there was no other option but to join his lab. I'm not going to lie to you – I was as intimidated as fuck. I spent my first couple of months there feeling unworthy to be there with him and all the smart people around me. Going from 60 to 0 as a well-oiled grad student data machine to a fumbling new postdoc had me teetering on the edge of quitting science.

But slowly I began to get it. He was one of the most inspiring individuals I have ever had the pleasure to encounter. He allowed us to feel invincible with him at our back, to be fearless and creative. Ironically, to do science as if we could lose the privilege at any time. He was and will always be my model for "passion", and I don't mean his life was only science. He passionately pursued fishing. He was passionate about his family. He was passionate about life. I had already learned all that by the time he got sick.

It lasted about a year. The most surreal, gut wrenching, exhilarating and emotional year of my life was watching my scientific hero lose his battle with cancer. He never gave up thinking about the future and possibility. He stared into the lion's eyes with his head held high and never lost his joy for all things, including science. Watching that way to live and conduct your life's work is a memory that I will hold for a lifetime. And it is the source of my inspiration for dealing with my own comparatively inconsequential problems.

Why so serious?
When it's only your life that’s at stake
Why so serious?
When your life is the art that you make


  1. Lyrics and title are taken from "Art Class (Song for Yayoi Kasuma)" by Superchunk. Also contains excerpts from "O Captain! My Captain!" by Walt Whitman.

  2. Thanks for your honest and beautiful words!

  3. Great post...it is amazing that you got to work with one of your heroes and that it was as inspiring and valuable as you thought it could be. I had good experiences but I couldn't say that any of my mentors inspired me to this extent. My experience of meeting scientists I admired from afar has been...patchy...and sometimes I think this has lowered my expectations of people or made me cynical in ways I regret. It also makes me worry that I haven't had examples from which to learn how to be this kind of mentor for my trainees.

  4. thanks for your blog… I am amazed at your honesty and courage to disclose your diagnosis in the workplace. I am not that courageous

  5. Thanks for this blog. I am also a research scientist, with ~25+ years of NIH funding. Luckily, I have tenure, so it was probably easier for me to be 'out' about my PD diagnosis. When I was diagnosed about 4 years ago, my first response was to call my chair and offer to quit. How could I possibly maintain my level of productivity and passion with PD lurking to steal me away from what I loved? My smart chair told me to wait 6 months before I decided what to do. Well, I waited longer than that as I struggled to get my meds properly titrated. Now, I just got another $3M NIH grant. I feel fatigued at times but also incredibly supported by my colleagues. Retire? No. When I am working, I have no fatigue, no PD, nothing but THE WORK. I am grateful for that.

  6. The content of this post stand alone in being touching, defiant and inspiring.

    The timing, and the W.W. quote gave me chills in light of recent developments.

    I won't pretend to have enough insight to pull the chaos of my thoughts together but I will say this: I'm glad you still post. Thank you for that. Sincerely.

  7. These posts help me in so many ways, I'm a neuroscientist with quite active Epilepsy and these posts make me realise just how trivial some of my problems are. It helps to keep the fighting spirit going.

    I love the use of music, its driven me too. I remember once dragging myself off the floor following a seizure with 'Little by Little' by Oasis on the radio. I'll forever associated that music with fighting Epilepsy's influence on my life. I swear I wouldn't have got off the floor right then if it wasn't playing.

    Keep it up, and thank you.