Do You Really Want to Know?
A life and death decision
What: Do You Really Want to Know? w/Jeff Carroll
When: 6:30pm Tues., April 21
Where: Pickford Film Center, 1318 Bay St.
Wednesday, April 15, 2015
For almost 30 years of his life, Jeff Carroll was, as most of us are, ignorant of Huntington’s Disease. Then, when he was in his late 20s, his mother became ill and Huntington’s officially entered his lexicon and forever changed his life.
Exceedingly rare, Huntington’s Disease, or HD, is a degenerative neurological illness with effects on the body that are best described as having ALS, schizophrenia and Alzheimer’s at the same time. Onset tends to be early, the progression is long and agonizing, and it is always fatal.
Invulnerable and impenetrable, as diseases go, Huntington’s is Superman and it has no kryptonite.
Carroll didn’t know all this at first, but he would find it out quickly enough.
Because Huntington’s is a disease that runs in families, it meant that when Carroll’s mother became ill, he also stood a 50/50 chance of developing the disease himself. With most diseases, Carroll would be forced to wait until he showed symptoms (or didn’t) to know for certain if he would be affected. However, HD is different—it carries a genetic marker that has been identified by researchers and can be tested for by doctors. If you don’t have the marker, you will never develop the disease and neither will your children. But testing positive for it is akin to receiving a death sentence.
So, then, if you could find out whether you would develop a fatal disease for which there is no treatment, would you elect to take the test?
This is the question at the center of Do You Really Want to Know, a deeply human and illuminating documentary directed by Oscar winner John Zaritsky that will show at 6:30pm Tues., April 21 at the Pickford Film Center.
The film follows three families affected by Huntington’s as they navigate the to-test-or-not-to-test question and the aftermath of their decisions.
While the film chronicles a range of experiences, Carroll, one of the documentary’s subjects as well as an assistant professor in the Behavioral Neuroscience program and department of psychology at Western Washington University, chose a strikingly direct route when it came to dealing with the hand he’d been dealt by Huntington’s. He decided to have the testing done, and when it came back positive for the genetic marker, he made it the focus of his career, earning his PhD and going into the field of Huntington’s research.
Carroll sums up that decision succinctly saying, “I don’t really have an explanation—it’s just me. I’m simpleminded and it was really as simple as: ‘Well, I have this problem, and I’m not really doing anything else with my life right now, so let’s get to work.’ In terms of how things went, it started as a series of small decisions—go back to school, seek out lab work—and from the outside those small decisions add up to looking like I had a grand plan. I didn’t.”
As someone from a Huntington’s family who became a Huntington’s researcher, Carroll was a naturally compelling subject for Zaritsky and producer Kevin Eastwood. The fact that he’d also been involved in outreach efforts to raise awareness about the rare disease meant he was both articulate about the subject and accustomed to talking about it, but Carroll found himself needing to take a break from advocacy efforts and so was a bit reluctant to take part in Do You Really Want to Know? at first.
“Initially, I was hesitant,” he says, “but [Zaritsky and Eastwood] were very engaged and obviously cared about the subject… Once it was clear that they were going to do a good job putting this story together, I felt a responsibility to participate. I think people with HD are facing issues that a lot of people in the world are going to have to face as genetic testing becomes more common—so we have a responsibility to talk about our experience.”
One of the issues that arises from this kind of genetic testing is that a positive result happens years, and often decades, before symptoms of the disease are exhibited. Needless to say, this can be a complicated thing to come to terms with. But Carroll, as he seems to be about so many things, is pragmatic on this point.
“Yeah, no young person thinks they’re going to die,” he says. “I give talks sometimes and say, ‘Everyone in this room is going to die,’ and people are sometimes pissed off—like I’ve told a big secret or something. Healthy people have a really hard time believing they’re mortal. At the same time, everyone with HD watched a parent die of it (or does eventually), and so there’s that reality, which is very harsh.”
Despite the fact that Carroll himself was decisive in his desire to be screened for Huntington’s, that is not the case for everyone profiled in Do You Really Want to Know?, and he understands their reluctance, acknowledging this is not a situation with a one-size-fits-all answer.
“Many people don’t want to know,” he says. “For whatever psychological or personal reasons, they’re happier not knowing ahead of time whether they’ll develop the disease. That’s a 100 percent valid and reasonable approach—just not the one for me. Many people say, ‘If I knew I was going to get HD I’d never be able to live my life.’ In that case, you shouldn’t get tested. Having said that, I think more people than get tested now would probably agree to get tested if they were offered the right kind of support and education.”
At present, Carroll is 37 years old and remains free of Huntington’s symptoms. As someone who has been intimately involved with researching the disease, he is optimistic about his future.
“I’m convinced there’ll be meaningful treatments for HD before I get to a point where I need treatment,” he says. “There’s amazing things happening in labs and clinics around the world right now—it’s incredibly exciting to watch, actually.”
Carroll will be on hand for the Pickford screening of Do You Really Want to Know? to answer questions about genetic testing and Huntington’s in general as well as the specifics of his experience. And his wish for what the audience will take away from the screening is rooted in his dual identity as scientist and someone with HD: “I hope people come away with a reminder that we’re all, more or less, at the mercy of our genetic inheritance. HD offers an extreme example of something that’s coming for everyone—a much clearer picture of our genetic burden. We’ve got to figure out, as a society, how to deal with this information fairly.”
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