Don Dawkins enjoyed his advocacy job until he was sidelined by medical issues.
“I didn’t have much contact with people other than the nurses and techs,” says Debise, “until I was able to start getting around on the prone pram. Things started getting better after I learned how to feed myself, then even more so when I got into a chair. I tried to keep my focus on healing and just getting through the skin stuff so I could get on to the next step, the real therapy.”
“The isolation can be taxing,” adds Douglas, who brought up ICU psychosis, a phenomenon that often accompanies confinement in or out of an ICU. “People think the four walls are closing in on them. I’ve experienced it — it’s quite real. You think you hear things that aren’t there and can’t trust your thinking.”
“You don’t get through theses times without a strong sense of self,” says Dawkins. “Reflecting on other hard times you got through is vital.”
Ways of maintaining self-worth and self-esteem varied from person to person. Debise and Lilly found that being active parents helped. Douglas cited spiritual practices such as meditation or prayer to keep yourself grounded. Miller insisted on always thanking people for what they did for her as a way to maintain humility and gratitude. Dawkins spoke of leaning on clergy or mental health professionals if necessary.
Fighting Worry, Fear, and Pain
Many people spoke of the strain of knowing others were depending on them. Such was certainly the case for Douglas, Miller and Lilly, all of whom were working, had employment or school responsibilities and/or people relying on them. Debise and Lilly faced the challenge of parenting and holding up their end of that responsibility.
“But my biggest worry was about getting the right care,” says Debise, “and about being in charge and having my way of doing things respected and followed. I learned how to ask for things in a respectful and appropriate way. And I turned things over to a Higher Power — I believed this had to be happening for some reason.”
Debise also had difficulty dealing with pain. “It was tough at times,” he says. “After surgery I had a lot of sensation at the surgery site, a lot of pain.” He tried out several mattresses before he tried a Clinitron bed, which he found — like Dawkins — “helped with the pain a lot.”
Miller worried about “becoming sicker, getting worse sores, and falling behind with school obligations,” she says.
Douglas feared that being gone too long could cost her a job, or the even greater fear that the confinement could be permanent. She also dealt with the additional stress of trying to balance her professional life as a physician and her privacy while being treated in a hospital that employed her. More recently, in dealing with skin surgeries, she was trying to maintain her job as a Senate staffer in Washington, D.C. “Very long work hours and long coast to coast flights took their toll,” she says, and the price was repeated skin problems.
“A lot depends on your employer,” says Douglas. “It’s important to be honest about what you can realistically do, so both you and your employer have the same expectations.” Ultimately, she came to the decision that health trumped her job, and she returned to Los Angeles to do advocacy in the health care reform arena.
Most everyone interviewed for this story was employed, and their income was critical to family or self-support; the risk of losing what they had was a huge and constant concern. But for some it was important to acknowledge that nothing was as important as maintaining your health.
“I didn’t like being down and not contributing, but I knew it was what I had to do in order to get healthy,” says Lilly. “What concerned me was the infection getting worse and not holding up my family responsibilities. I’d had a sore that I healed up when I was 17, but this was different, I have a family. My wife and I are a team, we have three boys under 16, one of them not yet in school. It was very stressful for both my wife and me. Wheelers forget how these things affect others in their lives. I was very scared.”
Fear and depression can be the biggest enemies of all, says Douglas.
“Getting depressed and having the ‘woe is me’ feeling is the ego complaining and saying, ‘this shouldn’t be happening, life isn’t fair.’ Surrendering to the situation opens you up so that other things will naturally align. By opening up and accepting the circumstance, a peace and inner stillness comes and opens you up to healing and much more. Being on bed rest feels like being out of control, but being in control is a myth. We are, however, in control of how we react to everything.”
Such a phenomenon might explain Dawkins’ experience with overcoming the need for hospice.
Staying Connected, Keeping Positive
“My boys kept my spirits up,” Lilly says. “I had spent each day watching the baby, Mikey, then Christian and Jimmy were with me after school. I think it was hard on the boys, because I could see they wanted me to go places with them but knew I couldn’t.”
Ironically, sometimes staying connected means maintaining your focus and saying no to others.
“I don’t prefer people to visit while I’m in the hospital,” Miller says. “I feel like crap, I don’t want to entertain anyone, and want the time to rest so I can get out of there. I call people if I need support.”
Lilly subscribes to the hermit school as well. Not wanting to be “the guy with the pressure sore,” he cut himself off from people and pretty much went into hibernation and focused on healing.
“It’s important to express your need for support and how you want it,” Douglas points out; “whether it be by phone, visits, getting sent flowers and pick me ups, and now with the electronic age, by computer, e-mails or Skype.”
For Dawkins, staying positive meant steering clear of bitterness and anger. “No one wants to be around negativity,” he says. “Watch comedy, surround yourself with folks that have positive viewpoints and find someone you can vent to without pissing them off.”
“Research studies show that happiness and joy are directly connected to feeling grateful,” says Miller, “so I tried to have little things with me that made me feel good — soft T-shirts, face wipes, fragrant body butter, my electric toothbrush.”
Maintaining Control, Appreciating Support
“I stayed busy and active,” Debise remembers. “I had a computer and learned to use Dragon Dictate. And like I said before, used a Theraband while I was down.”
Dawkins spent an enormous amount of time reading and learning. “I’d watch the History Channel and Discovery. My daughter talked me into getting on Facebook and I ended up liking it and finding a lot of old friends. I spent a lot of time on the Internet and a lot of time looking for humor and things to make me laugh.”