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Tuesday, December 21, 2010

The Gift

by Mark Dunning

I spend a lot of time in this blog writing about the desperation of Usher syndrome. I write about the fear that we all feel, the fear of what the disease might one day take from us. But it’s the holiday season s and for today, I’d like to talk about the flip side of that fear. I want to talk about the gift of Usher syndrome. First a quick story:

I met a fascinating man in London last week or, rather, I was reintroduced to him. I was traveling on business. My company’s home office is in the city. I have been with the company for 12 years now and when I first started, the Chief Financial Officer was a volcanic man, legendarily crass and vicious. Staff of all levels feared approaching him for he was wound so tight that the mere quiver of a voice could cause him to explode. When he was terminated a few years later for telling the Chairman to perform and unnatural act on himself a few too many times, there were streamers in the sky and Eewoks dancing in the trees. Tears were shed, but they were born of joy and relief. A time of great evil had passed.

So imagine my surprise when I was invited out by a large group of those I have worked with for a long time to go have a few pints with the very man described above. Stranger still, they were positively giddy at the prospect. He is a changed man, I was told, you will hardly even recognize him.

Well, I recognized him as soon as we walked in to the pub. He still had the same salt and pepper hair, the same glasses, the same roundish physique. There was only one noticeable difference. He was smiling. A lot. And he greeted everyone warmly, like he’d been anticipating the evening with relish. Before long he and I had a chance to talk alone and he told me his transformational story.

He had never liked his old job. Never liked the pressure. It wore on him every day, cranking him tighter and tighter and tighter until he could not help but explode only to be wound up again. After he was fired, he tried similar positions, always with the same result: pressure, explosion, and termination. Finally he reevaluated his life and thought about what he really enjoyed, what he really wanted to do, what would really make him happy. And the answer was clear.

He wanted to go to the pub, drink beer, and talk with friends.

That’s it. That’s what he enjoyed most. Well, it’s a little more than that. He didn’t want to just slink off and become some drunken sod propped on the corner bar stool. He wanted to experience lots of pubs and lots of beer and make lots of friends. He wanted to talk philosophy and sports, politics and love. He wanted a fulfilling life surrounded by people he enjoyed. He wanted to be happy.

His termination was the catalyst that committed him to action, but it was not for several more years before he found his opportunity. His epiphany came in the form of a contest. It was a beer tasting contest that included an essay and speech on why you liked a particular beer and what, exactly, beer meant to you. The winner was to be named ‘Official Beer Taster for the City of London’.

He entered, spilled his passion before all to see, and won. Now he writes a blog on beer and is paid several thousand pound a year to travel the city, visit the pubs, and have a few pints with friends. He is invited all over the world to beer festivals and brewery openings. And he is undeniably changed for the better. He is now one of my heroes.

But I have lots of heroes these days for his story is not unique, at least not in the world of Usher syndrome. You see we, too, find ourselves reevaluating the rubble of our lives. Yes, the man above chose his stresses while we had ours thrust upon us, but it doesn’t really matter what started the fire. All that matters is that the house burned to the ground.

In blowing away the ashes, I have uncovered the most amazing stories of success. People with Usher syndrome are not supposed to be able to ride horses or to dance or to sing in a chorus, but my daughter does. People with Usher are not supposed to travel Europe or speak multiple languages or be accepted to study at University College London, but I had lunch last week with a young lady with Usher who did. They are not supposed to pack up a van with other young deaf people and drive from the UK to India (yes, India!), but I dined last week with a woman who had. They are not supposed to climb mountains or change the ways of the US Senate or win awards for their charitable efforts when they are still teenagers or be invited to stand beside the President at a bill signing, but I know people with Usher who have done those things, too.

This past year I have traveled to Spain and Denmark. I have dined with friends in London and had a barbeque on a beach in Seattle. I have made new friendships with people in Taiwan, Australia, Greece, France, Israel, the Netherlands, Sweden, and Germany. I’ve watched my daughter speak at MIT and been taught genetics by professors at Harvard. I’ve run a road race and seen my daughter win a blue ribbon in a charity horse show. None of it happens without Usher syndrome.

I hope you don’t take the above paragraph as pretentious or promotional. It is simply to marvel at my family’s good fortune. My life, my daughter’s life, and those of the people described above are deep and fulfilling not in spite of Usher syndrome, but BECAUSE of Usher syndrome. Like my friend the beer taster, we all were forced to reevaluate our lives and to think about what we really wanted to accomplish. We all recognized that time is short and that the time to act on our dreams is now. Because time IS short. It’s short for all of us, regardless of whether we have Usher or not. The clock on our mortality is always ticking. It’s amazing how few people recognize that fact and how many fewer act because of it.

The beer taster and I talked about that over a pint. We talked about the massive river of commuters we saw in Victoria station plowing from somewhere to somewhere else. We wondered how many of them were really going where they wanted to go and what it would take to cull them from the herd.

For him it took a conflagration to cut him loose. For my family and me, and the many, many, many people I have been blessed to meet, it was Usher syndrome that changed their course. We all know the potential dangers that lurk out there, but at least for today we should see the good in Usher syndrome. It builds more families than it tears down, welds together more people than it separates, and enriches more lives than it ruins.

I still would not choose Usher syndrome for our family but I’m thankful we received it as a gift.

Happy Holidays.

Tuesday, December 7, 2010

Mentor torment

by Jennifer Phillips, Ph.D.

Time passes in the research lab marked by scientific conferences, submission deadlines, and project completion. There’s not much awareness of the academic calendar for those of us who don’t teach regularly, but from time to time we host a new graduate student for a 12-week stint that corresponds to our academic quarter system, which tends to wake us up to the fact that we actually work at a University (well, ok, that Oregon Duck Football thing is kind of hard to miss, too).

In most of the science disciplines, incoming Ph.D. students spend their first year ‘rotating’ through different labs they think they might be interested in. They usually complete a short, focused research project during this time, but it’s generally less about gathering scientific data than it is about an opportunity for the student to gather general information about the projects and personnel in a given lab and determine whether it would be a good place in which to pursue Ph.D. thesis work. Similarly, the lab personnel use this time to judge the performance and compatibility of the student, and at the end of the first year students select a research group to join.

Our lab had one such student—I’ll call her “RS”-- for the first term of this year’s rotation cycle, which is now in its final week. RS completed a very nice project in line with the Usher focus of the lab, and will give an oral presentation mere hours from now summing up the results obtained in the past 12 weeks. And herein lies the first great hurdle of first year Grad students: the bane of the short-format talk. These oral presentations are 10-12 minutes in length, during which time the speaker is required to give enough background on the topic to give their specific project relevance, present the results of their particular experiments (assuming there are any), draw conclusions from their findings, relate them back to the big picture, and graciously thank the members of the lab who helped them complete the work. This is followed by questions from the audience. Sounds simple, right? Except that for the neophyte researcher, it can be completely overwhelming and terrifying. Scientific presentations are different from nearly every other kind of public speaking, especially in the short format talk. Words must be chosen prudently, for maximum precision and impact. The data presented must be explained clearly and credibly, and the speaker must have sufficient grasp of the material to do this and field questions at the end of the talk, possibly from crotchety skeptics who didn’t buy a word of it. It’s a humbling experience, and it’s hard to do well right out of the gate, which is why everyone in my lab has been working overtime to whip our little RS into good shape for her presentation.

Frankly, it hasn’t been easy going, for any of us. RS did great work on her project, and actually has some pretty cool data to talk about, but she’s had trouble putting her work in context with the larger lab focus, namely our exploration of the molecular basis of Usher syndrome using zebrafish. There’s no denying that this is a daunting topic. Understanding Usher syndrome requires absorbing some amazingly complex cell and molecular biology, and it would be unreasonable to expect a student at the beginning of her scientific training to take so much on board without a struggle. Nevertheless, while one shouldn’t expect a perfectly polished, Nobel-laureate caliber talk from a first year Grad student, it serves as a useful vehicle for facing down the second great hurdle most of these newbies face: changing from informational learning to investigative learning. Think about it: every scholastic experience, from kindergarten through four years of college, is about absorbing canonical information from a variety of sources—books, video, instructors—all filling students’ heads with facts to be memorized and related to other, previously memorized facts. Training to be a professional scientist begins with the realization that, while there are still many facts to be learned, YOU, the researcher, are now required not just to learn them, but to vet them, and eventually, to produce them yourself. It’s a pretty significant paradigm shift, and one that a lot of students struggle with.

That’s where our intrepid RS is now: at the beginning of learning to question…everything. At the beginning of the realization that overstating a result, or putting too much stock into a hypothesis, or any number of other credulous rookie mistakes, can get you into big trouble. So we’ve been listening to her fun through practice talks, spending hours poring over every PowerPoint slide, nitpicking her every word, hammering her on the need to back up or back off her often overstated claims. Would it be simpler to take it easier on her and just let her give the talk she wants to give? After all, she did great work at the lab bench, got along well with everyone else in the research group, and generally had a good rotation experience. Is this 11th hour torment really necessary?

In my view, we’d be doing her no favors in the long term by giving her a pass on a sub-par presentation. We do have to torment her, constructively, just a little, because this is part of the training. Because most scientists will only ever get to work on one very tiny piece of a very big puzzle, and understanding the background and relevance of the work is a huge part of being able to formulate a scientifically and financially tenable project. Moreover, scientists who do good work but can’t effectively talk to other people about it tend to have a much more difficult time getting support for their ideas.

So, while I remain sympathetic to the enormity of her task, I will continue to try to impress upon RS the importance of choosing the best images and the best words to go with them. She may be stressed out, frustrated, and relieved when it’s finally over, but maybe the challenges she’s meeting now will make her next talk a little easier to get through. And maybe, just maybe she’ll decide that a project focusing on a complex disease like Usher syndrome, and coworkers who challenge her to be precise and focused in communicating science might provide the best environment for her scientific training.

I hope so, because we need more talented researchers working on Usher syndrome, now and in the future. We need fresh perspectives and innovative ideas that will be grounded enough in good, rigorous science to withstand criticism and contribute to our growing body of knowledge about what happens in this disease and what tools we can develop to stop it. We academic Usher researchers are not only in the business of discovering new things about the disease, but also of discovering and cultivating new talent. For that reason we need to keep our intellectual standards high, to continue to hammer prospective contributors on getting it right, all the way down to the nitty gritty. This is not just to benefit lab productivity in the short term, but to benefit the entire research field, and, most importantly, the Usher families who are relying on us to come up with something to help them.

Whether RS, in the fullness of time, will become the next great Usher researcher, or indeed whether she will even choose to join our lab remains to be seen. Whatever the case, we have provided her with the first exposure to Usher syndrome research, and the rigor and critical thinking necessary to succeed in this field. Furthermore, we have added one more to the total number of people in the world who know a bit about how Usher syndrome works and what’s at stake for the families affected by this disorder. And, when RS delivers what I’m sure will be a completely awesome talk, she’ll use her 10-12 minutes to enlighten a few other people who, until today knew nothing about Usher syndrome. There’s no way to predict the potential impact of these presentations on anyone in attendance, but this is how new ideas and collaborations are born. These students, these talk formats, provide yet another opportunity to spread the word and raise awareness of what we’re all working so hard to conquer.

Here’s wishing everyone a joyous and peaceful holiday season.