On July 7, 2018, Chris Dunn survived a freak diving accident that left him paralyzed, on a ventilator and mostly blind only to face an even more hellish reality: a year living in a Maine ICU fighting for his right to go to rehab and get back to living his life.
Other than a short-lived attempt to return home a few months after the accident, Dunn, 44, did not leave the ICU for over a year. There were no local rehab centers that could accommodate his needs and after initial efforts to find an out of state rehab failed, he found himself stuck.
Unable to see, eat, breathe or move on his own, with little to no access to therapy, Dunn, a father and concrete worker, spent day after day lying in bed listening to the History Channel and hoping for a chance — just a chance — to show he could do more. After hearing Dunn describe his stay, perhaps the best way to describe what he went through is a living nightmare. “I’m pretty sure they just wanted to kill me,” he says. “I wasn’t too happy. It sucked.”
The notion of a hospital wanting to kill a patient may seem far-fetched, but when you consider that administrators repeatedly urged Dunn’s mom, Carol, to consider putting him in hospice the nightmare becomes much more real.
“I cried and felt so desperate. I was scared to death every day and didn’t want to wake up because I knew there would be a fight,” says Carol. “I’d go into a room and I was outnumbered by doctors, nurses and case workers and as it went on, more and more came in. They thought if they increased the numbers I would give in. But you don’t give in for your child. You don’t give in for somebody who wants to live. And Chris told me, ‘Mom, I can do this.’ He wanted to live.”
“We Need Help”
Carol refused to give up. After seven months of reaching out to hospitals and rehab centers all over the country and receiving nothing but rejections, in February 2019 she filled out the online form to join United Spinal Association. In the space on the form where applicants can ask a question she explained Chris’s situation and wrote “We are desperate … We need help please.”
Carol’s application and plea landed in the mailbox of Jane Wierbicky. Wierbicky, a longtime nurse, is one of six members of United Spinal Association’s Resource Center team. Every month the team receives between 200-300 new member applications, and every application gets assigned, read and, if needed, responded to. Wierbicky emailed Carol the next day, beginning a partnership between the Dunns and United Spinal that would eventually turn the tides and get Chris back to living his life.
As Carol explained what had been going on since Chris’s injury, Jane and Resource Center Director Bill Fertig developed a fuller picture of the problem. By all accounts, Chris had a complicated situation. Using a ventilator alone limited the number of rehab facilities willing to consider him, but his injury had also left him mostly blind and necessitated the installation of a pacemaker and feeding tube.
“Carol felt like he had originally been denied from some rehabs because of his medical condition –because he had a lot going on,” says Wierbicky. “She thought they’d be able to revisit things and get him into rehab when he was more stable.”
When Carol kept getting rejected and hospital staff and administrators started suggesting alternatives and that she consider hospice, she grew frustrated.
“People kept shutting the door without even trying, without even giving us a chance,” she says. “That’s unacceptable to me.”
Wierbicky agreed. “It’s always shocking to me when we see cases where that doesn’t happen,” she says. “It became clear to me through this case that people living in rural states that don’t have dedicated spinal cord injury programs and those who are on ventilators are in an especially vulnerable position … all she ever wanted was for him to be evaluated by people who understand his condition. That seems like a very reasonable goal.”
“I’m not a fighter, but I never felt like I had a choice,” says Carol. “It wasn’t right and I wasn’t going to let it just sit.”
Working together, Carol and the United Spinal Resource Center team took the fight to get Chris into rehab to the next level. They enlisted Disability Rights Maine, state legislators and federal representatives and turned over every stone trying to find a suitable facility. They held weekly phone calls with hospital staff and MaineCare, the state’s Medicaid program.
Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. “There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’” says Carol. “I mean, what’s a mother to do with that?”
Thanks to the relentless team effort and Carol’s fortitude, by early April, Shepherd Center in Atlanta was reemerging as a possible destination for Chris. Carol had looked into Shepherd earlier and been told it wasn’t an option because of Chris’s insurance, but after much wrangling they came to an agreement.
“I said, you know, if we go to Shepherd and they can’t do anything we’re still okay because I know that the best people in the world at least had a chance to look at Chris,” she says.
Return to Living
The Dunns’ dream came true, and July 16 they boarded a plane for Atlanta. Chris was ecstatic, but after so many false starts, Carol remained on edge until they rolled into the hospital.
“There were people literally waiting there to hug us and say, “We’re glad you’re here. We’ve been waiting for you,’” she says. “And for the first time in over a year I felt a calmness and I was able to take my first deep breath.”
As one of the nation’s premier SCI rehab centers, Shepherd Center was perfectly positioned to address Chris’s needs. “We were able to give him a lot other facilities wouldn’t have been able to,” says Tammy Arnold, the case manager for the SCI Unit who oversaw Chris’s case.
“Shepherd Center has the full breadth of services for catastrophic patients,” says Chet Bhasin, Shepherd’s chief strategy officer. “Starting with a 10 bed ICU all the way thru to outpatient clinics we can provide care the appropriate level of care at the right time for any brain injury or spinal cord patient.”
“We’ve got great people here and great teams, to support him: therapists, psychologists, nursing, assistive technology, even a neuro-optometrist to look at some of the visual changes he had with the anoxic brain injuries that we suspected,” says Dr. Wesley Chay, the doctor who coordinated Chris’s care. “We had an interdisciplinary approach to get Chris — and his mom and girlfriend — back to living.”
Respiratory therapists went to work trying to wean Chris off the ventilator and strengthen his voice, while physical and occupational therapists tried to undo the damage a year of lying in the ICU had done to his body, including extreme rigidity and extensive neck extension that prohibited him from eating.
“They were a Godsend,” says Chris. “They loosened me up and got me back lots of range of motion.”
The team helped Chris build up the lung capacity to only need the vent at night. “That makes a huge difference,” he says. Chay says Chris had always believed he could wean himself, but he needed someone to believe him who knew how to support his efforts.
“It wasn’t so much a surprise, but kind of a confirmation of, ‘Hey, you know what, Chris was aware of some things that he really thought he could do,’” says Chay. “At Shepherd, we’re really trying to just find where people are at, and you know, find the things that they’re passionate about.”
High atop Chris’s list was getting back outdoors after a year under florescent hospital lighting. Rehab therapists helped him check that off his list by taking him fishing. “I caught a fish!” he says. “He was just a little fellow, but we caught a damn fish!”
After over four months at Shepherd, Chris and Carol headed back to Maine. While Chris was in rehab, Carol found an accessible apartment and worked with the team of advocates she had assembled to set up the things Chris would need to live independently.
They returned home on his birthday and settled in to enjoy Thanksgiving together with his girlfriend at home. They are still fighting to get the caregiving, equipment and benefits Chris needs, and they still hold weekly calls with the United Spinal Resource Center team, Disability Rights Maine and others, but things are improving. “It’s going to be slow and we have to be very safe,” says Carol, “but even if there was no further improvement, I am happy.”
Thinking back on the days before Chris finally went to Shepherd, she recalls a rare moment of doubt where she wondered if she was advocating in Chris’s best interests when she fought the hospital’s push to send him to hospice.
“I don’t know that I would have been able to make things happen without the United Spinal Association,” she says. “I was getting tired. I wasn’t going to give up. But they came in and propped me up and gave me some courage and some encouragement to keep going. They pointed me in some right directions and stood behind me, and that’s all I needed to cross that finish line.”
Chris is off the vent all day and only uses it for a few hours a night, hanging out with friends he hasn’t seen in ages, and following his beloved New England Patriots as they try to make it back to the Super Bowl. He is eager to keep improving and plans to start his own United Spinal chapter to help others like him.
— Ian Ruder
Editor, New Mobility Magazine