The Human Touch
September 21, 2009
by Jennifer Phillips, Ph.D., Mo.M.
Ok, this is the week where I officially stop being such a wet blanket. Even as you read this, I'm working on a post containing some promising news from the world of science. While I'm putting the finishing touches on that opus, I just want to briefly respond to Mark's last post, specifically regarding the relative expertise and motivation of Usher researchers vs. parents, siblings, teachers, social workers, mentors, or other members of the support network surrounding an individual with Usher syndrome.
Leaving aside for a moment the fact that there are actually a few Usher researchers out there with a personal, vested interest in the outcome of their experiments, it is generally true that many of us view Usher syndrome on more of an academic level than a personal one. It is true in my case, certainly. I don't pretend for a minute that all the research I've done on the various Usher genes and associated pathology enables me to understand the disease on the level of real life consequences that Mark or most of the readers here do. In addition to being a Ph.D., however, I am an 'Mo.m' as well. I can't presume to know what it's like to have a child with Usher's, but every poignant word Mark writes about his parenting experience resonates with me as a mother first, scientist second.
Figure 1: Two kids + one Ph.D. = Five years well spent.
As I read Mark's post, I realized that I may not have done a very good job in expressing my empathy for the parents reading this blog. Mark is so adept at writing those inspirational posts, and rather than trying to follow suit, I've tried to provide some contrasting professional perspective: a Spock to his Kirk, a Science Nerd to his Homecoming King, my Facts vs. his Feelings. I think this balance is what we were both looking for in this collaboration, so while I'm not going to change my M.O. all that much in the future, I do want to assure you all that I have abundant respect for your expertise as parents of children with Usher syndrome. I am here to inform, but I am also here to learn from you. I value your unique contributions to the cause we all share, and I appreciate the personal connection to Usher syndrome that I can glean from parents discussing their hopes, fears, and frustrations. It provides a new dimension to my work, and some valuable perspective on what is at stake, beyond my individual satisfaction at exploring the molecular mysteries of Usher syndrome and the benefits to my immediate environment that such explorations can yield.
I'll be back to my regularly scheduled facts and figures later this week. Please stay tuned.