Editor's note: This is the latest profile in Kelsey Whipple's ongoing series highlighting local political activists.
The worst day of Patty Skolnik's life lasted 32 months. It started the day her son Michael, a 22-year-old college student, passed out. Doctors found a small dot on his brain, an asymptomatic cyst, and though he had stabilized, Skolnik called a neurosurgeon for a second opinion. This time, the news was more alarming.
"You're lucky he didn't die when he passed out," the doctor on the phone said. "He needs surgery in the next 48 hours."
At this point in her story, Skolnik apologizes. It's been a while since the medical rights advocate, founder of Colorado Citizens For Patient Safety, has recounted her son's tragedy instead of someone else's. In the years since his 2001 surgery, Michael's case has become the plot of a documentary and fodder for legislation, both of which have taken over some of her role in telling it. But today, she is on her own. She points to a photo of Michael she keeps in her office, showing him bandaged and smiling the day he went into surgery. On the bottom of the frame is a quote from Winston Churchill: "Never, never, never quit."
She hasn't. The dot, explained the doctor Skolnik can legally only call by his first name, David, was blocking Michael's cerebral fluid and causing his brain to swell to life-threatening levels. But during a six-and-a-half hour surgery scheduled to last half of that, Michael's health changed for the worst. Skolnik did not discover the doctor's malpractice history until months later, but by then she was unsurprised. And furious.
Here's a 2007 PSA featuring Michael Skolnik's story:
"Sometimes I feel as though, had I known enough and waited and really looked into the doctor, none of this would have happened," she says. "But I Googled him and found only that he had his degree from where he said he did. We didn't know the extent of what we didn't know. Every single person should have access to the entirety of their medical caretaker's professional history."
That sentiment, a result of Michael's story, has since taken over Skolnik's career. From the time his initial surgery ruined Michael's brain, his condition grew progressively worse, leaving his parents with more than $4 million in medical bills and a lawsuit against his doctor, David. During the final three years of his life, Michael changed hospitals more than ten times, gained 100 pounds and lost the ability to walk and speak. He retained the mental capacity of a third grader, and most of his days were spent in pain and on heavy medication.
When Skolnik tried to communicate with him, he could only move his right hand into symbols suggesting "a little," "a lot," thumbs up," "thumbs down" and "stop." Occasionally, as another symbol, Michael would spastically form a gun with the same fingers and point it at his own head. After opening his eyes and mouthing "I love you" to his parents, Michael died on June 4, 2004. "All for nothing," his mom says through tears. "I never want to stop crying when I talk about this, because I don't want to become an android. I just never know when I will cry."
In 2006, Skolnik downgraded her job as the vice president of operations at Crème De La Crème Preschools to become a consultant for the company while she launched a nonprofit, originally called Colorado Citizens For Accountability. But when residents called her about issues including water, air and a bad mattress, she eventually decided to change the name and narrow her intentions. In September 2008, Colorado Citizens For Patient Safety emerged.
The organization's first mission was its largest one to date: In 2006, Skolnik partnered with state senator Morgan Carroll on the creation of a bill that made doctors histories immediately available to all Coloradans through a quick online search. The next year, she tailored its punitive wording, and in 2011 the state added more medical professions to the list in the same way she hopes to do again in 2013.The original bill is in Michael's name -- an honor that is rarely allowed.
Today, the 63-year-old works as the outreach representative for Cerebral Palsy of Colorado, where Colorado Citizens For Patient Safety is located; she is still its only paid employee. The calendar behind her desk, immediately below a collage dedicated to Michael, is scribbled with lectures, meetings and trips to Italy and other countries. She works as an advocacy trainer for the Department of Defense, and in October, Skolnik created a program called Switching Chairs.
Split into two sections, the program teaches patient safety and advocacy to both medical providers and their patients through the use of medical record notebooks and other training materials. In 2012, her organization is applying for a grant to teach retired doctors to become advocates and continue this training.
"For me, for all this time, through all these years, the answer is still just, 'Because it's the right thing to do,'" Skolnik says. "The more people know this material, the better informed the public will be."
In the same year, Skonik is pushing for additional medical transparency requirements that would make medical professionals identify their ranks on their person: Residents would wear a badge saying so, nurse practitioners a different badge, etc. And though 21 states currently regulate some form of medical transparency requirements, she hopes to partner with former Colorado Supreme Court justice Rebecca Kourlis to take Michael's bill federal in the future. After all, David, the man who performed Michael's surgery, has since worked as a surgeon in both Nebraska and Glenwood Springs.
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"We promised Michael that we would leave the medical industry better than we found it," Skolnik says. "That's what gets me up in the morning."
Can you think of any other political activists we should profile? E-mail suggestions to firstname.lastname@example.org.
More from our Politics archive: "Eleanor Dewey of Colorado Anti-Violence Program on the power of the (young) people."