Instead of allowing Huntington’s disease to defeat her, Sarah Foster has decided to leave a legacy of activism.
By Taylor Sisk
Sarah Foster was feeling a change come over her, and preferred not to consider its source.
Nonetheless, she accepted that it was best to know, to “put a name to whatever was invading my mind.” So she decided to get her blood drawn.
The answer was what she suspected, and dreaded. She was positive for Huntington’s disease, an inherited neurological disorder that causes nerve cells in the brain to waste away, affecting control of movement, cognitive abilities, mood and behavior. She knew that HD is a disease that’s progressive and fatal.
That was in December 2010.
Though it took some months to pull herself out of the depression that followed her diagnosis, and a few more until she was “back,” she discovered that she wasn’t ready to give up.
Foster is a proponent of the seventh stage of pioneer psychoanalyst Erik Erikson’s theory of psychosocial development: “generativity versus stagnation.” That’s the stage in which adults between the ages of, roughly, 40 and 65 challenge themselves to create something of benefit that will outlast them, a legacy.
Foster, who falls within this demographic, considers herself to be undertaking that challenge.
Since her diagnosis, she’s become an activist in the effort to find a cure for HD, a disease that’s affected the lives of more than 30,000 Americans who have been diagnosed. More than 250,000 others are at risk of having inherited it.
She organized an annual paddler’s event that will be held in April on the Neuse River, near her New Bern home, open to “anything that floats that doesn’t have a motor on it,” she says.
More recently, she’s taken her efforts online.
“First there was a blog,” Foster said on a recent late morning over ice coffee, “and a lot of people started going to the blog, and I was getting some good feedback. So I thought, ‘What else can I do?’”
So, with an appreciative nod to the ALS Ice Bucket Challenge, she launched the HD Pie In the Face Challenge.
“I thought, ‘Pie In the Face,’ because one of the things I’ve always wanted to do was get a pie in the face. So I figured, “I’ll get to experience that,” and raise some funds as well.
Since Foster took the first pie in the face on Aug. 15, in her front yard, videotaped by her husband, Randy Foster, editor of the New Bern Sun Journal, the challenge has taken off. One of the two organizations that Foster requests donations be made to, the Huntington’s Disease Society of America, reported a quadrupling of online donations in the two weeks following the launch.
Pies have been propelled faceward in several European countries now, with particular enthusiasm in the UK. A Pie in the Face campaign is underway in Canada. A serviceman in Afghanistan didn’t have at his ready disposal the ingredients to make a pie, so he improvised, using yogurt. He then did a push-up into his concoction.
In videos submitted, people have been prematurely pied, in the middle of their spiels; others have received an unexpected second or third pie. There’s been some synchronized serial pieing. A lot of folks have very cleverly done the HD Pie in the Face and then the ALS Ice Bucket to wash it off. “I’ve only seen one person do it the other way around,” Foster said.
The challenge has also gotten a mention on cbsnews.com.
Of the whole experience, Foster said, “It’s pretty amazing.”
‘Simple signs’
The Pie in the Face Challenge has given Foster focus. HD can be all consuming. Its effects are cognitive – leading to poor impulse control and trouble with memory and organizational skills – physical – in advanced stages, jerky, uncontrolled movements and trouble with balance – and emotional, triggering depression, irritability and apathy. In time, it robs those afflicted of the ability to walk, talk and swallow.
HD can strike at any age, but onset comes most typically in the mid-30s to mid-40s. Death most commonly comes 15 to 25 years post-onset. There is yet no cure.
But there is, for Foster, generativity versus stagnation. Her latest challenge is jazzing her.
“To me, [the Pie in the Face Challenge] has been, like, the coolest and most important thing I’ve done other than have a family,” she said. “I feel like any kind of awareness of HD is a victory.”
That she herself remains fully aware of her condition is, today, a celebration: Awareness slips from those who live with HD as the disease takes deeper hold. Eventually, that’s arguably both a curse and grace.
“Part of me hopes that by the time my hard symptoms hit, I will lose my awareness,” Foster has written on her blog. “The notion of living through HD and being fully aware of it seems horrific, like enduring a surgery that lasts for 25 years without anesthesia. Perhaps the lack of awareness is a blessing.”
For now though, there’s this work. Foster is mindful of the importance of keeping things in perspective. For a while, she focused on bringing actor James Franco aboard the cause after he tweeted about the Pie in the Face challenge. But that prospect now looks dim. Time to move on.
Her focus is now primarily on progressing in increments: She’s channeling her Pie in the Face efforts on a grassroots, statewide campaign, hoping to spread the challenge a hospital at a time, meeting with the PR folks at one and encouraging them to challenge another nearby.
She’s encouraging advocates to get their schools and churches involved. She wants to see Pie in the Face booths at fall county fairs. And she’s aiming to get local celebrities and politicians on board. (New Bern Mayor Dana Outlaw took one to the mug, calling it a “smear campaign” he could get behind.)
“[I]f I was somehow able to face the thing with my eyes wide open, it might make the road easier for my caregivers,” Foster continued on her Huntington’s Disease and Me blog, “I might be more compliant, more reasonable. I would certainly be more like me. If there is such a thing as an awareness muscle, I am exercising it now in the hopes that I can stick around and notice the ride.”
For today, it’s compliance in pursuit of outcome, a vigorous exercise regimen: generativity versus stagnation.
“Generativity,” says Wikipedia, “in essence describes a self-contained system from which its user draws an independent ability to create, generate, or produce new content unique to that system.”
That’ll work for Sarah Foster, today and for the foreseeable future.
“I am developing simple signs to use with my loved ones,” she concluded in that recent blog, describing her preparations for what may lie ahead. “One means ‘I love you.’ The other means ‘I’m still in here.’
“I hope I will be.” Regenerative energy onward.
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