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When the Unexpected Happens
Things couldn't possibly be better for her. The most famous and richest people in the world would be traveling with her. The way they were going had been taken by thousands of others, for years; the path was very well known, and its dangers were minimal and easily avoided. She carried with her the latest wireless communication equipment, so she would always be in touch if there were any problems at all. She came from one of the world's most elegant and well-respected companies. She was built with the most advanced technology to be the fastest, most beautiful and, above all, the safest one of her kind ever. No, nothing could go wrong.
The description above is of a ship, but not just any luxury liner. Unfortunately, the story above is about the ship that everyone now thinks of when they think of "complete disaster": the R.M.S. Titanic. The point is, unexpected things can happen at any time. What made the Titanic sinking such a tragedy is that her owners had not planned ahead for any problems; because there were not enough lifeboats onboard for all the passengers and crew, over 1,500 men, women and children - three-quarters of the people who had been on the Titanic - died. Following this catastrophe, new laws were passed requiring every ship to carry enough lifeboats and other emergency gear for every person onboard, so that the "unexpected" would never be unexpected again.
Every day, in all our lives, things go wrong. While everyday matters that don't turn out the way we expected are nothing like the Titanic, of course, they can still be very upsetting. And for people who have challenges to their health, such as a spinal cord injury, it can be more than just annoying when the unexpected happens; it can lead to illness, including pressure ulcers (which means the same thing as "pressure sores" or "bedsores").
Most people follow a set of habits as they go through their day from morning to night. People may prefer a certain way to do things, maybe because it's the way they learned to do it growing up, or they may have created a way of getting things done that is more convenient because of where they currently live, the people they live with, or what they are able to do easily. Think about your own daily schedule. Are there household chores you need to do every day, or weekly? Which tasks do you like to do yourself, and which ones would you rather have someone else, like a care attendant or family member, do? Do you usually dress your upper body or lower body first? Is there a specific time you like to eat your meals? Do you play music while you do things, or do you prefer peace and quiet? Are there things you need to do at a certain time, like go to work (whether paid or unpaid), attend a club or group, or watch a favorite television show? These activities you do regularly, and in a particular way that works best for you, form your routine. When you follow a routine, things go fairly smoothly; in fact, you don't even have to think very much about your routine because you have it worked out so well 1.
When something unexpected happens to interrupt your routine, it's sometimes hard to get back on track. If your care attendant can't come because they are sick, for example, then all the tasks you were going to do together will have to take place later, or maybe not get done at all. If the wheelchair-accessible transportation you reserved is late in picking you up, then you might miss your doctor's appointment and have to wait weeks to get a new appointment. Several of our study participants experienced unexpected events that caused them to change or stop healthy habits. Ken, for example, had to look for a care attendant when his mother, who usually was his caregiver, left town for a while. He had a hard time finding a reliable personal attendant, and in the confusion caused by not having help, Ken came down with urinary tract infections and pressure ulcers. Robert was stuck at the airport when his flight was delayed, and had to remain up in his wheelchair for 19 hours, which he wasn't used to. The result was a pressure ulcer.
Sometimes unexpected life events that are very upsetting can cause interruptions in your routine. For example, when Alley was in the hospital getting bedrest to deal with a pressure ulcer on her lower leg that was not clearing up, she found out her best friend was dying; she checked out of the hospital to be with her friend. The result was that the pressure ulcer got worse. The unexpected happened to Alley one more time when her case worker told her that she would not get her usual Social Security payments for her care attendants while she was in the hospital. On top of that, she heard that her late friend's home had been robbed by an ex-care attendant. Once again, Alley had to check out of the hospital, this time against her doctors' advice, to try to handle her finances, and her friend's estate; by time Alley came back to the hospital, the pressure ulcer on her leg was so infected that she had to get an amputation. Brenda was so shocked when she found out she might have breast cancer that she didn't give a lot of attention to a small pressure ulcer while she waited to find out the results of tests for cancer.
What our study participants learned was that the unexpected, whether it is a small, annoying event like a delay in schedule, a bigger problem like having to find a new care attendant or straighten out a medical expense that was denied, or a major life event like the death of a loved one or a new illness, can turn your carefully created schedule into one big mess. It might be hard to continue pressure ulcer prevention practices when something unexpected has happened.
So how do you deal with the unexpected? Above all, stay as cool as possible; the calmer you are, the easier it will be to think clearly and creatively. This is really a chance for you to use problem-solving skills. For example, planning ahead can be a good way to solve a problem before it even starts. Studies have shown that people with spinal cord injuries often report that when it comes to activities, everything takes a little longer. For new activities, people with spinal cord injuries stated that they sometimes feel worried because they don't know what to expect; to deal with this successfully, they talked about taking time to plan the activity in advance: find out what is needed for the activity, where it will take place, how to get to that place, how much time it should take, whether money or reservations are needed, and so on. They then add extra time in to allow for any difficulties they might run into 2. These kind of problem-solving skills - gathering information ahead of time, setting a schedule with extra time, making sure you have what you need to get the task done, etc. - can help you avoid the unexpected.
Other problem-solving skills for planning include writing down each step of what you want to do, gathering together everything you will need for your task before it starts, and finding a resource you can use if you run into a problem, such as an instruction book, information website or the phone number of someone who could help you. You could call this "making a Plan B" that you could use if your original idea, "Plan A," doesn't work out. An example of this could be planning to do a skin check with your care attendant, writing down the steps of checking skin and buying a mirror in advance; if your care attendant couldn't help with your skin check, you could go through the written instructions by yourself, look at a website on how to check your own skin, call your doctor or a nurse at the hospital to get instructions on how to do skin checks yourself, or call a trusted friend or family member to help with the skin check. Another example of planning ahead might be if our study participant Ken and his mother might have worked together to find a new care attendant for him before she left town, so that he wouldn't be stressed out doing it by himself.
There are also problem-solving skills you can use after the unexpected happens, to help you get back on track. The first thing to try might be to use your "Plan B" resources, like phoning an expert, reading a book or going to a website for advice or help. Another "Plan B" might be to change one part of what you want to do - either the who, where or how - so that it will still be possible. For example, looking back at some of the experiences our study participants had: when Brenda was upset over her cancer tests, and didn't feel like taking care of her pressure ulcer herself, she might have asked her care attendant to do it (changing who did the task); when Robert was stuck in the airport, he might have asked the airline to find a place where he could transfer and lie down to relieve pressure on his bottom, or do pressure reliefs in his chair or in the plane seat (changing where the task was done); and when Alley was dealing with her financial problems, before she left the hospital she might have made appointments to talk with her case worker and with the police handling her friend's robbery for the same day or for one day after another, so that she would only have to be out of the hospital for a day or two (changing how the task was done).
Another way to help you decide the best thing to do when the unexpected happens is to compare your possible choices to see which one is best. A good system for this is to make a list of all the positives, or "pros," that go along with an option, then make a list of all the negatives, or "cons." For example, for Alley, the pros of taking care of her dying friend included helping a friend in need and being able to say a final goodbye to her, and the cons included the strong possibility her pressure ulcer would get worse without hospitalization. The last step is to look at the pros and cons side-by-side; sometimes just seeing the good and bad possibilities next to each other makes the choice very clear.
These were some very general ideas of dealing with the unexpected. How did you adjust when something unexpected happened in your life? There was probably a time you came up with a very creative solution that fit your situation exactly, since you were the one who thought of it. If you want to tune up your problem-solving skills, you could ask your doctor for a referral, or prescription to see a health care specialist, for an occupational therapy consultation; occupational therapists are experts in showing people how to use problem-solving skills that will fit their particular needs. While no one may ever be able completely to "expect the unexpected," you can expect to have choices of different things to try so you can cope with the unexpected, and get back to your regular routine as soon as possible.
If you would like to use the Internet to get more ideas about how to deal with unexpected events, a good place to start might be to learn about how unexpected life events cause stress. Two researchers from the University of Washington, Thomas Holmes and Richard Rahe, identified some of the most common and most powerfully upsetting life events. They used that information to create a way to estimate how stressful a person's life is by giving a certain number of points to each unexpected event, based on how difficult that event was for most people to deal with. The result is called the Holmes and Rahe stress scale.
A useful article about unexpected events - to be specific, natural disasters, such as fires, earthquakes and hurricanes - is When Disaster Strikes, on the website of Mainstream, an online magazine that supports the rights of people with disabilities, or, as the magazine says, "the able disabled." The article explains that in some ways, people with disabilities are better at handling natural disasters than other people because they are used to dealing with "barriers" in daily life, and that it is extremely important to keep emergency supplies available, such as medications, assistive equipment, and so on. (Speaking of emergencies: if you want some suggestions about how to get out of a building safely in an emergency, try the Evacuation Preparedness Guide, by June Isaacson Kailes, on the website of Center for Disability Issues and the Health Professions at Western University of Health Sciences.
For an interesting story of how one person with a spinal cord injury handled unexpected events, try Handling Disappointments after Life Throws You a Curve, on the website of Dr. Rosemarie Rosetti, a writer and inspirational speaker who received a spinal cord injury in 1998 when a large tree fell and hit her as she was riding her bike. Dr. Rosetti, who also is an expert in her hobby of gardening, also has other articles on her website with suggestions for coping with stressful or difficult situations.
The Cleveland Clinic Health System (CCHS) has a number of helpful articles about how unexpected events cause change, and then change causes stress. If you'd like to find a website that lists life events that cause stress, and ways to stop stress, in a clear, easy-to-remember list, Coping With Life's Stressors, on the CCHS website, is very good. CCHS even has an article called Coping With Holiday Stress which has suggestions for dealing with problems that come up at holiday time; for some people, holidays can be stressful times that cause a change in regular habits and routines. If you like "medical-sounding" language, The Phases of Stress, also by CCHS, explains the phases of stressors as their effects increase, and offers solutions to contend with each phase.
Another idea on the Internet for coping when something unexpected happens comes from an article, Forgiveness and Spinal Cord Injury, in an online newsletter from the University of Michigan Medical School. It talks about a study that found something very interesting: people who have had a serious injury (which, of course, is a very stressful and unexpected life event) but who are willing to forgive themselves and forgive others, tend to feel better about their lives and to have better health than people who hold onto anger and stress. (Look for the article on page 7 of the newsletter.) An abstract of this research into forgiveness and stress reduction, Forgiveness linked to spinal cord injury rehab, which uses very technical language, is also available.
Any of these websites might be helpful for keeping in mind that no one can predict the unexpected, or stop unexpected things from happening, but people can change how they react to these unpleasant surprises. Remember: taking good care of your health is more important than ever during stressful times!