University of Southern California Mrs. T.H. Chan Division of Occupational Science and Occupational Therapy
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Confusion and Chaos

If you want to avoid tooth decay and cavities, you would probably brush your teeth daily, and maybe even floss and using a mouthwash besides. If you want to lose weight, you would probably cut out junk food, find a diet plan, and maybe even increase your level of exercise or activity besides. If you want to avoid pressure ulcers (which means the same thing as "pressure sores" or "bedsores"), you would probably do regular pressure reliefs, check your skin daily, keep your skin clean and moisturized, and maybe even eat a healthy diet and rest in bed for a day or two if you see a red spot. The point of all this is that when you have a health goal in mind, it's only natural to set up a regular routine of healthy habits that you follow daily. And when it comes to sticking to habits, it only makes sense that the best way to do that is by making a fairly steady foundation for yourself. When you are distracted by unexpected events that happen, or when you are upset by stress, it's hard to continue doing things the way you normally do. That's why people whose lives are filled with confusion and chaos (that is, total disorder) often stop practicing good habits. And when people with spinal cord injuries drop their healthy habits, they run the risk of developing a pressure ulcer.

When a person gets stressed out, whatever the cause, it's hard to think about anything other than the problem that's creating all the stress. Without an inspiration to guide them through a trying situation, people can feel - and act - lost. The way a person gets back on track is by trying to get in touch with their strong foundation, whether that be family and friends, a spiritual belief, their neighborhood or community, or their job, whether it's paid or volunteer work. When a person doesn't have these roles or resources to hang onto for support, they can lose their way. The result can be confusion about who they are supposed to be, what they are supposed to do, and how they are supposed to do it. And in a state of confusion about these large matters in your life, taking time to check your skin for redness or sores may not seem very important (even though it is important). This is one way that leading a confused or chaotic lifestyle can result in pressure ulcers.

Chaos can be a more frightening condition than just confusion. When someone loses their home due to financial or legal problems; or when a source of income suddenly dries up; or when a person that someone relied on, whether it is a spouse or partner, a parent or child, or a care attendant, is no longer available; or when there is a sudden change in health status; or when someone gets involved in gang or criminal activity, either to make money or to feed a drug or alcohol habit, a person's life can feel like it is spinning out of control. It's not that the person just feels confused, it's that they truly don't know how they are going to get through the next day. Their life is full of very serious worries. Where will they live? How will they pay for food, or rent, or medicine, or other necessities? Will they survive this change in their health? Who can they turn to for help, or support, or caring? Are the police going to arrest them? Is there a danger they'll O.D., or get shot in a drive-by? When life feels upside down, when it feels like danger is around every corner, this is chaos. And in this state of chaos, smoothing out wrinkles in clothing or bedding to prevent friction seems like the very least of a person's worries. And this is how a chaotic lifestyle can lead to developing pressure ulcers.

A disruptive lifestyle that leaves a person in a state of confusion or chaos can also affect a person's attitude and emotions. For example, a person who feels confused about life, who does not have a clear sense of what is going on, may easily lose a sense of meaning about their life. A life without meaning can lead to depression, a mental and emotional state that is difficult to deal with. When life is full of chaos, when if feels like the roof is caving in because there is no sense of order and a feeling that anything bad could happen - "What fresh hell is this?" the writer Dorothy Parker (who battled alcoholism) used to joke when her doorbell rang - a continuing feeling of fearfulness, or anxiety, can set in. Both of these states are stressful, and stress has been proven in medical studies to damage a person's health 1. Ongoing states of upset feelings like depression or anxiety might be treated with medications prescribed by a physician or psychiatrist, but removing the source of the unhappiness, by trying to get life back to a steady, "normal" state, might be a better cure.

Sadly, some of our study participants went through hard times when confusion and chaos ruled their worlds. For example, Billy, who currently rents room from his mother in the garage of her house, spent the years after his spinal cord injury moving around town because his family kept changing where they lived. It was hard for Billy to put down roots anywhere. Steve went through a separation from his wife after his spinal cord injury because of his dangerous lifestyle - he was involved with gangs and drug-dealing, activities that unfortunately led to his being shot to death after being part of our study. Charlie, another study participant, does not speak English, making it hard for him to get the health care he needs. He also experienced a tragedy when two of his cousins were killed in the World Trade Center on 9/11, and his aunt and sisters, whom he lived with, moved to New York to deal with their deaths. Without having his aunt and sisters to take care of him, Charlie had to move into a nursing home. Adding to the chaos of his life, Charlie decided to move out of the nursing home when a married couple offered to let him live with them; by the time Charlie left the nursing home and arrived at the couple's house, unfortunately the husband had passed away and the wife no longer wanted Charlie to live there. The result was that Charlie ended up homeless for a while. During that extremely chaotic time, Charlie was attacked, robbed and (not surprisingly) developed pressure ulcers.

If the situations in your life seem like they are getting out of control, it's important not just for your peace of mind but for your physical health as well to do what you can to find some organization and order. Reach out for help with difficult situations; perhaps there is someone among your friends or family, your health care providers, your case worker, your care attendant, or a trusted religious advisor like your pastor, priest, rabbi, imam or teacher, who can give you counseling or assistance that will help you to get your life together again.

If the chaos in your life is caused by homelessness, talk to people at your church, temple or mosque, or, if you don't regularly go to a place of worship, try finding one near you whether it is your faith or not; there might be people or organizations there who can help you. Homeless veterans can try calling the national Veterans Administration (VA) information number at 1-800-827-1000.

Find out about resources in your community to help people in an emergency, whether it is Medicaid/MediCal funding for health services, temporary shelters for homeless people, drug and alcohol counseling, free or sliding scale mental health counseling, legal aid or any other services that will allow you to replace chaos with a sensible lifestyle. Even if it is difficult, make every effort you can to find a still, calm center in your life so that you can form and keep good habits that will allow you to stay healthy, and stay pressure ulcer-free!

The Internet might have more information that will inspire you when you are confused or feeling out of control. A page on the website of The Mayo Clinic, which is a well-respected health care and research center in Rochester, MN, with a stated mission "to empower people to manage their health," talks about coping skills and getting support, which are especially important for people with spinal cord injuries. Coping skills include talking with people, working on personal relationships and taking better care of yourself, all with the goal of taking control of your life again. (The Mayo Clinic page also has links to a number of topics related to spinal cord injuries, such as treatments, stem cell research updates, and tips about working and exercising.) Also think about looking for books or Internet pages written by the people or ideas that inspire you, whether that means finding an online Bible, Torah, Koran or dharma study group, a page of quotes or the life story of an inspirational person, like the late actor-director-activist Christopher Reeve, or sarcastic, sometimes offensive or South Park-style, cartoonist John Callahan, or the motivational books of Philip C. McGraw, better known as "Dr. Phil." Dr. Phil's books Life Strategies and The Life Strategies Workbook are specifically about making a plan to change your life by changing your habits and attitude; used copies available at Internet sites like usually cost much less, and copies can usually be checked out for free from your local library. (Daytime television shows starring Dr. Phil and Oprah Winfrey, who also inspires a lot of people, are seen in most cities across the country Monday through Friday.) Whatever way you choose, help yourself to get back the feeling of being in control of your life!

If you are homeless and a veteran, go to the Veterans' Administration website on Homeless programs and initiatives; or try the National Library Service for the Blind and Physically Handicapped (NLS), which has a list of phone numbers and addresses of Organizations for Veterans with a Visual or Physical Handicap. The National Coalition for Homeless Veterans can be reached by phone at 1-800-VET-HELP; a page on their website has a step-by-step guide for getting help, and has a list of phone and Internet resources for assistance on housing, health care, substance abuse and mental health treatment, employment, financial aid, legal help, and a special outreach section for female veterans. If you are a homeless vet and need health care, Healthcare For Homeless Veterans Programs By State lists local phone numbers and addresses for VA Medical Centers across the country.

1 Dhabhar, F. S. (2002). A hassle a day may keep the doctor away: Stress and the augmentation of immune function. Integrative and Comparative Biology, 42, (3), 556-564.