Spending day after day in bed can be a challenging nightmare, whether it’s just a few weeks, months, or years. It can be isolating, boring, uncomfortable, scary, depressing, unhealthy, dependent and unproductive. It’s a journey we do not choose, but once we’re committed for the long haul, hopefully we’ll emerge better and wiser.
Joe Debise, 31, injured in a car accident a little less than two years ago, showed up at Craig Hospital in Denver as a C4 quad after a three-week stay in an ICU with a stage IV skin sore. “I was down for three to four months trying to heal it until they figured out during a flap surgery that the bone was infected as well. I was down for six more weeks, then up for very limited periods. It took a month before I was able to stay up for about six hours a day, and another six months to totally close. It was like being on work-release.”
For the newly-injured, experiencing extended down time can be especially troublesome. “The hardest part was being so isolated and totally dependent for everything, especially when in bed,” Debise says of his initial rehab
Coping with the day-to-day tedium can be even more challenging than negotiating the world on wheels. Hopefully, the experience of those interviewed here can help us make the best of medical complications, self-rehabbing and restoring ourselves to good operating condition.
According to Model Spinal Cord Injury Systems statistics, between 16 and 25 percent of all people with SCI will experience at least one post-rehab re-hospitalization during their first 15 years post-injury, most commonly from urinary tract infections and decubitus ulcers. Even as little as a week or two in a hospital away from your adaptive and familiar environment can seem like an eternity, and the stress alone can take a toll on energy and require a significant amount of time to regain what has been lost. So it makes sense to learn from those who have survived and prospered through dark days.
Nicole Millerwas 20 and in college when an automobile accident left her a C4-5 quad. Major complications have plagued her for years since — pneumonia, bladder and kidney infections, septicemia. “I didn’t get much out of initial rehab because I was so sick.”
Miller, still enrolled in college, was discharged to an apartment, where her mother joined her for about six months. After that she was on her own for about a year. “Then I lived with my sister for two years, then in assisted living for three.”
She managed to earn two associate degrees, one bachelor’s and two master’s after her injury, despite countless hospitalizations. She was learning not only in the college classroom, but in the everyday school of SCI as well. She says it took some time to find her limits. “Going to school full-time, I was running my body down repeatedly.”
Fortunately, she learned to apply what she was learning in the classroom to taking care of herself in a chair and, more importantly, in a hospital.
Susan Douglas knows her way around hospitals, being a neurologist as well as a T8 wheeler since 1985. Despite the strains of med school, internship and residency, she avoided medical problems until ’97, when she first had back surgery to address chronic pain. She says the 15 years since have given her more experience with being down and confined — the result of pain and skin surgeries — than she either wants or needs.
“Most surgeries require about six weeks of recuperation. Back and skin surgeries often require more. For someone used to living a busy, full life — full-time work, advocacy, law school and travel — spending weeks on end in bed can be both maddening and stressful.”
Don Dawkins, 65, from Sarasota, Fla., is emerging from a two-year bout with skin sores and life-threatening bone osteomyelitis. Surprisingly, he refers to his experience as “not depressing, but enlightening.”
In 2006, recovering from skin surgery, Dawkins, a para, took a job as an advocacy coordinator for the Florida Independent Living Council. All the traveling was just too demanding. By 2009 he was breaking down physically. “I was constantly fatigued and figured that was normal at 62. I had no appetite, had to force myself to eat and ended up running out of gas and decided to retire.”
Skin breakdowns were something Dawkins was used to after 46 years on wheels, but this time around fooled him — his sore was abscessing from inside. By the time he went to a wound clinic, he was running a 103 temp. Three surgeries and more than a year later, he was told he would need to limit sitting time to an hour a day. His doctor recommended a double amputation to remove more possibly-infected bone.
“By this time I’d been on IV antibiotics for 40 weeks, lost 35 pounds, was nauseated and soaking wet with the sweats. I just surrendered — I said no to any more antibiotics and went home.” Presumably to die, as he began receiving hospice care there.
Then, inexplicably, ever so slowly, he began to feel better. “I’d have a good day or two, then feel lousy again, then have some more good days. I continued to improve, though I still had the wound. I got a Clinitron bed and that seemed to help some. After about six months, the hospice people told me they couldn’t provide any more services because I didn’t need them any more.”
Sometimes no more services can be good news.
James Lillyhad a less serious — and more common — experience. “I was using a leaky ROHO, then my back-up cushion went bad and I tried a homemade cushion of foam. I was stupid. One day I felt my skin was really crusty and when I took a look, I saw an opening.”
Lilly, from Chicago, on wheels since he was 15 back in ’84, decided to treat himself. He e-mailed photos to his doc weekly. That was a couple weeks before Thanksgiving; it would be close to Christmas before he was back on wheels.
During that time he was greatly troubled by the fact that his wife, Nora, was carrying the load.
“One good thing about it all,” he says, “was I couldn’t eat much being down all the time. I lost 41 pounds and went from an XL to a medium.”
Meeting the Challenges
“When you’re in a hospital that’s not familiar with SCI, you have to educate everyone,” says Douglas. “If you’re too sick or too psychologically taxed out, you really need an advocate to ensure you get the care you need.”
Miller had to learn self-advocacy. “This was very challenging,” she recalls, especially when around staff unfamiliar with SCI and paralysis. “I learned the importance of asking for what you need, getting it and making sure staff followed through — like getting turned, being sure my cath tubing has slack, not getting phone calls to my room when I can’t pick up the phone, not having my medical info released without permission. Another problem was having a doctor who thinks he knows more about my body than I do.”
Similar sentiments were echoed — loudly — by Douglas and Dawkins, who both voiced a weariness with medical professionals who tend to discount the knowledge that comes from decades of living with paralysis.
Keeping Your Sense of Self
Dawkins spoke of the challenge of keeping self-esteem and sense of self intact while hospitalized.
“I don’t think it’s meant to be that way,” he says, “but you can be treated like a slab of meat, stripped of your individuality.” Loneliness and boredom also take their toll on sense of self. “Days begin to blur, you lose track of time. You can forget the day of the week or the date.”
“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.”
He also suggests keeping a daily journal and insisting on staying informed about every step of medical progress or decline, to maintain the concept of being in charge of his life.
“I always tried to have something to look forward to in the future,” says
Miller, “like summer or class or enjoying the little things. I talked to my Dad when I was super sad and sick. He would tell me to try and get through the day and tomorrow would be a new one.”
Few of us get through hard times alone, and many of us require assistance once out of the hospital. That role often falls on spouses or family members, who probably already have their hands full.
Nora Lilly, James’s wife, who works full time, suddenly found herself juggling more balls when he took to bed to heal.
“Working outside the home and having the three boys is overwhelming in general,” she says. “When James was down, it just got worse, what with the increased responsibilities, errands and entertaining the kids. It’s a struggle emotionally.
“The time James was down gave me a better understanding of all he brings to the relationship, all he does for us and with the boys. I was concerned that the bed rest would go on longer and understood better why he has always been so cautious about skin issues. I don’t want to go through that again.”
Dawkins also spoke of the strain his ordeal was on his wife, a registered nurse, and his college-age daughter.
No one plans for long-term confinement and most everyone assumes these things won’t ever happen to them. But once it becomes reality, it’s critical to realize that you have entered the Serious Zone, which requires attention, focus and commitment. The wheelers we interviewed realized the stakes and summoned the energy and strength to deal with the day-to-day challenges while holding a vision of a positive future.
|Tips on Getting Through Down Times:
• Focus in quickly on doing what’s necessary to get better. Veteran wheelers know the consequences of skin issues and quickly make the necessary commitments.• Find ways to stay positive. For some it may be commitment and obligation to family and children; to others a commitment and desire to continue with work or school. It definitely helps to create a positive vision of the other side of your present circumstances.• State your needs clearly and effectively — whether it’s reaching out for needed support or staying more isolated and conserving energy to heal.• Find ways to stay busy — be it with insurance paperwork, parenting and family interaction, school and/or work obligations and aspirations, or by reading and learning new things either professionally or for self-improvement.• Do what’s necessary to obtain necessary care. Medicare and some insurance covers post-hospitalization and skilled nursing visits, usually through an agency. Some people have spouses who can help, but others may need to rely on family and friends. If uncertain about your situation, get a second opinion.
|Rehabbing YourselfMaintaining a prolonged level of inactivity comes with a price. Some say a week in bed comes at about a month’s price of re-gaining fitness.Veteran wheelers, having the advantage of being in “chair shape” for many years, usually go back to whatever they were doing before. But if they lose significant muscle or flexibility, they know it takes dedication and exercise to get it back.Those with newer injuries face the task of adjusting to the physical demands of living on wheels for the first time, often without the benefit of quality rehab, either due to poor insurance or because they burned their rehab dollars dealing with other serious medical issues. Their task can be more challenging than physical reconditioning alone. They may have to focus not only on building strength, but also on learning or re-learning chair skills and adjusting to chair life, as well as finding ways to contribute and take control of their lives.Joe Debise, newly injured, was very motivated to work on strength while still in ICU. “When I was down I got very weak and was afraid I’d lose more strength, so I began to use the Therabands and then weights. I felt myself getting stronger, which motivated me more.“I’m still new at this, still learning how to find ways to contribute, ways to feel I’m doing something. I try to set goals, like using my manual chair on the carpet and spending time on the computer and learning how to do most things on my own. I’m more functional and stronger now.”
Nicole Miller seemed to apply the same discipline and planning to physical conditioning that she applied to her schooling and employment.
“I like having a schedule to build back ‘up’ time. That helps prevent sores and decreases the lightheadedness. It also helps me feel productive and relieves stress.”
Try to be realistic with goals — remember how long you were down and the price it takes to fully recover. Sometimes I have to take it hour by hour,” says Miller, an addictions counselor. “Jumping right back into life may not be helpful to my long-term goal of health and staying out of a germ factory — otherwise known as the hospital.”
And the gamers out there might want to consider the Wii. Craig Hospital has been doing some research using the video system in rehab. Physical therapist Julie Waldie suggests trying Wii Sports and Wii Sports Resorts games, including bowling, tennis, golf, baseball or basketball. Any game that uses the hand controller and the flip of the wrist movement is appropriate. Once up, try the ski and surf games for balance.