By Randi Bjornstad
The Register-Guard January 27, 2013
Publication: Register-Guard, The (Eugene, OR) Page: 31E Word Count: 1815
After eight weeks in intensive care – even with a feeding tube running through his nose, a ventilator helping him breathe and his voice reduced to a labored whisper – David Oaks struggles to deliver a four-word message as his wife, Debra Nuñez, bends close to listen and translate: “… 38 … years … of … activism …”
His choice of words doesn’t surprise her. Since he was 19 and a student at Harvard University – and throughout their 30-year relationship – Oaks has lived to advocate for a variety of topics, from not forcing psychiatric drugs on patients who don’t want them; to reversing global warming; to limiting pollutants emitted by huge, local high-tech industries; to opposing fluoridation of the local water supply.
Through the years, he has written dozens of letters to the editor on policies he believes violate the rights of the poor, disenfranchised or simply unwary.
He’s been the subject of stories in The Register-Guard for his activities and author of several op-ed pieces, usually on his most fervent crusade: championing the rights of people with mental illness.
But all that came crashing down on Dec. 1 when Oaks, 57, took a fall trying to coax the family cat down from a loft in the detached writing studio at the couple’s Eugene home.
“He finished what he was working on and came into the house, but he said the cat was up in the loft and he needed to go back out and get it down,” Nuñez recalls.
“After about 10 minutes, the phone rang. It was David – luckily he had his cell phone in his pocket. He said, ‘Something terrible has happened.’ ” Thinking the cat must have come to some sort of grief, Nuñez ran out to the studio, where she found that Oaks, who had been wearing a popular brand of clogs slickened by the rain, had slipped on the bunkbed-type ladder to the loft and fallen backward.
“He was upside down, with one foot caught in the ladder,” she says with a shudder. “It was just lucky that I was home, or I think he might not have survived.”
When she reached his side, “He said, ‘I can’t feel my feet, now I can’t feel to my waist,'” Nuñez says. “He said, ‘Put your face by me – I think I’m leaving you.'”
“Longest stay ever …”
As it was, Oaks suffered a broken neck as well as crushed bones in his chest that resulted in formation of dangerous blood clots. His injuries were worse than they might have been otherwise, Nuñez says, because he has been living for more than two decades with a condition called ankylosing spondylitis.
Spondylitis refers to an inflammation of the vertebrae, the bones that make up the spine. Ankylosis means fusion or immobility of joints. While the condition mostly affects the spine, in some people other joints also may be affected. The U.S. Centers for Disease Control and Prevention estimates that more than 2.5 million people nationwide have some form of spondylitis. Its cause is unknown.
The earliest signs of the disease are pain and stiffness in the lower back and hips, which develop gradually and with time may wax and wane or even disappear. The cartilage between the breastbone, or sternum, and ribs also may be affected.
As the condition worsens, the body tries to create new bone, which fills the space between the vertebrae and eventually fuses them together, making that portion of the spine inflexible. When the rib cage also is affected, the fusion restricts lung capacity and ability to breathe easily.
All that has happened in Oaks’ case, causing him to remain in the intensive care unit at Sacred Heart Medical Center at RiverBend ever since the accident happened.
His underlying condition has been complicated by bouts with pneumonia and urinary tract infections that have been accompanied by fevers spiking as high as 107.8 degrees, as well as a collapsed lung.
Because of the spinal cord injury, Oaks has no feeling in his lower body, and he has just begun regaining ability to move his fingers and hands.
“They say he’s broken the record for the longest stay ever in ICU (here),” Nuñez says.
Not a good move
That dubious honor has caused some potential problems for Oaks in his attempts to recover. Early last week, PacificSource – Nuñez has health insurance through her job at the Eugene Public Library – indicated they wanted Oaks moved to Portland, to Vibra Specialty Hospital, which bills itself online as the “only long-term acute care hospital in Oregon,” specializing in “weaning” patients from ventilators that help their breathing.
“The medical social worker at the hospital told me that PacificSource doesn’t want to pay for any more time in ICU,” Nuñez says. “But one of David’s doctors said that moving him to Portland would be psychologically very damaging to his recovery.”
She fears it also could be physically damaging. Because of his breathing difficulties and the rapid onset of fevers caused by infection as well as possible damage from the fall to the hypothalamus, the gland that regulates body temperature, Nuñez and a loyal roster of friends take turns spending the night in his room in the ICU.
However, as of Saturday, Oaks’ condition had improved sufficiently that physicians at Sacred Heart released him from intensive care and relocated him to the hospital’s Neurology Department, Nuñez said.
“What is really encouraging is that he has been able to breathe on his own without a ventilator.”
Longtime activists
Oaks and Nuñez, both longtime local activists, have a large network of friends and acquaintances. They met “at a treesitter’s house” back in the heyday of the campaign to prevent the commercial logging of old growth timber.
“We were both seeing other people at the time, but once I realized how empathetic David was on so many emotional levels, I began to think, ‘Why am I dating other people?’ ” Nuñez says. “Besides, he was so cute.”
They soon became a couple – “We did the hippie pre-engagement crystal exchange sort of thing,” she says – and married much later, in 1998.
Oaks’ passion for activism – particularly the rights of mental health patients – began with his own experiences in the 1970s, when he was a student at Harvard. Because of the severity of his injuries, he can’t talk for more than a minute or two at a time without exhaustion, but by now Nuñez knows his history nearly as well as he does.
His life also has been chronicled through the years by the Los Angeles Times and National Public Radio.
In 2009, along with the Dalai Lama, Oaks was named one of “50 Visionaries Who are Changing the World” by the Utne Reader, a national alternative magazine that covers politics, culture and the environment.
He grew up on the South Side of Chicago in a working class, devoutly Roman Catholic Lithuanian household and arrived at Harvard – his father’s union gave him a scholarship to attend – as a social and economic fish out of water. “He didn’t have money, he didn’t have fancy clothes, he didn’t have society connections,” his wife says. “He was very young, and he was trying hard to fit in to this new situation.”
As many college freshmen do, Oaks began to question his entire existence – intellectual ideas, religion, personal morés – and, in those days when many students experimented with marijuana, Oaks “experimented with it a lot,” Nuñez says.
At some point, he experienced a psychotic episode – possibly triggered by heavy pot use, she says – and was hospitalized. “But they said he was an incurable schizophrenic, and they gave him that label.”
Not only that, they also gave Oaks anti-psychotic medications that he neither wanted nor believed he needed, sparking his life of activism against the forced medication of patients with mental illness and the concept that they should be allowed to participate in defining their diagnosis and designing their own care.
As Oaks told NPR during a 2007 interview, “I was locked up five times between the ages of 19 and 21 in psychiatric facilities at Harvard. I had entered into extreme and overwhelming mental and emotional problems.”
However, he came to realize that “the current mental health system is about drug, drug, drug, drug, drug,” to the exclusion of many other approaches available to communities – peer support, drop-in centers, housing, advocacy – to help people with mental illness, Oaks said then.
“The pharmaceutical industry has kind of taken over the mental health system. But that was not my route, and thank goodness.”
He believes “it’s all about choice,” Nuñez says. “When they said David was an incurable schizophrenic, his response was, ‘I don’t think so.’ He knew himself, and he found other ways – family, friends, nutrition, exercise and lifestyle – to bring himself back to health.”
Oaks went on to graduate with honors from Harvard, in government and economics.
“The strongest person”
How much Oaks is able to recover is anybody’s guess, Nuñez admits. At the least, she assumes she will have to remodel the couple’s home to make it accessible by wheelchair and outfit it with equipment needed to care for a person who is not ambulatory.
She’s just beginning to explore the effect on the family’s assets if Oaks remains completely disabled and his ongoing care requires that he become a patient within the Medicaid system.
In the meantime, word of his accident has begun to trickle through the Lane County community, where his reputation as indefatigable activist has evolved through the years from radical to respected. The organizations he has created along the way likewise have metamorphosed from the early in-your-face actions of Support Coalition Northwest and Support Coalition International. Since 1986, Oaks has led MindFreedom International, a more mainstream but still defiantly independent coalition of 100 groups in a dozen countries with a board of scientific advisers that includes psychiatrists and psychologists.
“I have known David (Oaks) for years and am deeply saddened by his current situation – I hope for his recovery,” Eugene mayor Kitty Piercy says. “David has been a strong and remarkable advocate for folks who have mental illnesses. He has spoken out for treatment that is humane and empowers individuals to participate in their own care choices. He has been tenacious about this, even taking it to our city Human Rights Commission and authoring a city resolution (regarding) patient rights that was supported by our council.
“He has contributed a great deal to the human rights of people of our community, and kept on moving on these rights, in the face of adversity at the local, state and federal level.”
If anyone can triumph in the face of this much adversity, it will be her husband, Nuñez says, and she will be at his side to help.
“David is fearless – he is not afraid to walk into danger and do what he needs to do and tell people what he thinks,” she says. “He’s got his act together. He’s the strongest person I have ever met.”
HELPING DAVID OAKS
Contributions: To help with Oaks’ skyrocketing medical needs, checks may be written to David W. Oaks Irrevocable Trust, c/o Chase Bank, 1100 Willamette St., Eugene, OR 97401