Monday, March 25, 2013

Don't Tell a Soul

For anyone who was wondering, I intend to keep this blog anonymous. I showed it to some people and told them it's me, and as a publicly P-having PI, if you care to know who I am you will eventually be able to do your research to ID me. Nonetheless, it will be a lot easier to write from behind a curtain, even if it's translucent. That said, since I'm growing less uptight about getting busted, I thought I'd share some stories I held back from writing about in the past because they are specific enough to give me away if the right people read them. These are instances when I really just wanted to drop the charade and scream out that I have P. I think they give a good sense about how occasionally surreal my life became.

The first time I really felt the intense awkwardness and pressure of having a secret occurred when I returned to the Major Urban Medical Center where I was diagnosed to participate in a study. This is something I try to do periodically because I think it's a good deed and I am always interested in what they are looking for.

Anyway, I walked into the movement disorders clinic, which I guess occupies a whole floor in the neurology building at MUMC. So bear in mind that there is really no reason for anyone who isn't an employee to be there unless they or a companion have a movement disorder. After checking in at the desk I walked around the corner into the waiting room.

The room was empty except for two people. One of those people was someone I know.

It wasn't just someone I knew - it was actually a person I knew from my field. Someone I had spoken with at a meeting the previous year and tried fruitlessly to recruit to join my lab as a postdoc. Ze was someone I knew well scientifically, and ze knew me, but we have no personal relationship. If I was going to start breaking the news about my P to the scientific community, it wasn't going to be with them. The following exceptionally painful conversation ensued.

Star Student Who Turned Me Down: "Hey. Parker."

Me: <looking up in surprise> "Ohhhh...hhey SSWTMD." <...awkward silence...> "Are you doing a postdoc at MUMC?"

SSWTMD: "No, I'm in Bigshot Neuroscientist's lab at Nearby Elite University. I'm here with my dad" <points to older man sitting next to SSWTMD>

Me: <blinking> <considerably more AS>

SSWTMD: "ummm... small world"

Me: "yup"

After a bit more blinking and awkward silence, I took a seat. aaaand... brief agonizing conversation terminated. It was not lost on me that this would not likely be the last time something like this would happen. Ugh.

Incidentally, if you are by some chance reading this SSWTMD, I'm really really sorry for that. And I hope your dad is doing well.

The second story was an interaction with One of My Trainees. We were discussing another scientist that we had met who had a minor handicap that limited their potential for manual dexterity. I should note that a lot of the techniques that my lab uses regularly require that you are good with your hands. OoMT questioned whether ze could perform such techniques or would be limited by their handicap. I'm not going to lie to you this really grated on me. I am constantly telling my people that good hands are not primarily about manual dexterity, but about adapting techniques so that they work for you and (importantly) attention. to. detail. Case in point, I have fucking P! And I perform these techniques quite well so far. This would have been an illustrative point to make but I had to bite my lip.

Incidentally, if you are by some chance reading this OoMT, sorry. No hard feelings - I'm over it :)

The third and final story is the most surreal and the one where I most felt I missed an opportunity. Occasionally at TSRU a situation presents itself calling for the faculty to mingle with some Insanely Rich People. My wife and I found ourselves invited to dinner at the home of Very Famous Scientist, where our job was to talk to the IRPs, who are often very interested in science. It was a crazy scene. Neither before nor since have I have ever been in a room with anywhere near as high a density of ascots as was on display that evening. Maybe I hallucinated this, but I swear I saw a guy wearing a captain's hat like Thurston Howell III. Maybe there was a monocle, but I'm not sure. Much of dinner was spent talking to NYT Best Selling Thriller Author and his wife.

Anyway, later Cool Assistant Professor Colleague and I found ourselves in a long and really interesting conversation with a wealthy businessman whose adult children were born with a neurological condition. This is often the way that these laypeople get drawn into science, but I have to say the vast majority that I have spoken with are really sharp, are deeply interested in science, and appreciate the critical value of basic research.

As CAPC and I were engaging the man, my wife turned away to chat with VFS's wife. While she did that, IRP turned to me and said the following:

"Parker, you're a neuroscientist. What do you know about Parkinson's disease?"

IRP and CAPC each looked at me and awaited my answer. I wanted to tell my friend and colleague what I was going through. I wanted to look IRP in the eyes and say: "Funny you should ask that. Not only am I a neuroscientist, but I also have P." I wanted to launch into an eloquent monologue putting a personal face in the science of P. I wanted to conclude by saying "And that is why the basic brain research we do at TSRU is so important."

I did not do or say any of that. Instead I proceeded with a dispassionate yet accessible description of the pathological basis and characteristic symptoms of P. It was an intellectually engaging conversation and like I said, IRP was a sharp guy, but it wasn't the conversation it could have been. Incidentally, around this time my wife turned back from her separate conversation to find that we were discussing P and silently freaked out wondering how this happened and how I was feeling about it.

I hope this doesn't sound mercenary or cynical, like I was trying to get the guy to open his wallet. Not at all. Rather I am disappointed that I let a chance to make a personal connection for this man with P, to educate people about it. This is one of the main reasons I have decided to stop hiding.


  1. Don't Tell a Soul is the title of my least favorite Replacements album.

  2. Ha, I dropped by to ask whether you'd be keeping the blog running. It felt like this venue could be a transitory stepping stone between having a secret and not having one, and of course the issue of pseudoanonymity is a trickier one when real world people can find your internet self in practice and not just potential.

    I'm very glad to hear about the supportive responses you've gotten... I'd love to keep hearing your thoughts as you move forward. These days, every day feels like it might be a tipping point in my own life/career (but isn't that true for everyone?) and there are precious few places to look for insight. Plus, you're a good writer. :)