Spinal Cord Injury Information

I sincerely hope the information presented will be useful and help you and yours cope with this devastating injury.

If you do not find a subject shown here, please let me know and I will certainly try to research the information and present it on this website in continuing updates.

SCI INFORMATION, Changes

This important section is devoted to the changes that take place in the SCI body, and includes important information on the circulatory system, the respiratory system, the psychology and psychosocial adjustment of the SCI, even sexuality, sex after SCI.

You Are Still You!

  Becoming spinal cord injured was probably the worst thing that has ever happened to YOU. YOU cannot change what has happened, leave it behind, or ignore it. One way or another, YOU have to deal with it. It’s not easy.

  To make a very important point, the word YOU was purposely emphasized in the above paragraph. Many people each year are involved in accidents that result in spinal cord injury. Everyone is unique, and this does not change after injury.

  There are many life experiences all rolled together that make you who you are and that is not going to change just because you may have to use a wheelchair now instead of legs for getting around. To put it another way, there is no reason to assume that your personality, intelligence, style of interacting with other people, and other personal traits will change as a result of injury. If you were smart, friendly, obnoxious, argumentative, hard-to-get-along-with, finicky, bossy, or goal-oriented before your injury, chances are very good that you will be the same way after injury.

  Don’t be surprised, however, if you experience feelings such as intense sadness, frustration, and anger. These are normal human reactions that can occur in response to unfortunate things that happen to you. This is very common after injury and will lessen with time and new learning experiences. Tips on how to deal with these and other feelings and reactions are provided next.

  It’s often said that one of the hardest things about coping with abrupt onset of disability is that you’re suddenly thrust into it with all your able-bodied beliefs, attitudes, and misconceptions.

  Do you know any people with disabilities? Are any friends or family members disabled? How about fellow employees or fellow students? If you have known someone well, you have probably discovered that the disability gradually seemed less important as the relationship grew. First impressions or initial attitudes are not always accurate, and they may change over time.

  Many people have varying attitudes and impressions that show how they feel about people with disabilities. You may discover that you possess some of these beliefs as well, especially if your association with people with disabilities has been very limited or nonexistent. What are some common attitudes toward or first impressions about people with obvious physical disabilities? Here are some examples:

• Pity or sympathy for the individual, which often results in a condescending or patronizing attitude.

• Personal discomfort, anxiety, or fear of being around the individual with a disability. Therefore, such a person is actively avoided.

• Assumed cognitive/mental impairment because of physical disability.

• Assumed dependency because of physical disability.

• Assumed "second class" citizen status. Therefore, people with disabilities may not be included in many activities or functions of their communities, or they may not be treated with equal respect by others.

• Unearned praise of the individuals because they are "so brave" or "have coped so well."

  However, your attitudes about yourself and the attitudes of others (family, friends, and even strangers) can change. But beliefs do not change overnight. This is a gradual process that occurs with new learning and behaving. You may find that you are a student" in the rehabilitation facility and a "teacher" on the outside who helps others to reassess their attitudes about physical disability.

  Each individual has a unique way of responding to major changes in lifestyle. How you respond to having a spinal cord injury is very personal and involves a wide variety of thoughts and feelings. Not everyone has the same experiences, but sometimes it helps to know that there are some problems that others have had to face. Others have found useful ways to cope with those problems, and these are available to you.

  As mentioned earlier, it is important to consider "who you are." Some people prefer to ignore personal problems, others like to talk all the time, and others may want to call their favorite talk-show host or write to "Dear Abby" for advice. There are many ways to respond to personal needs and concerns. Most important, whether you read a book, talk with a friend, go to an educational group, or seek professional counseling, it is essential to choose what is best for YOU.

  Almost all patients go through a "why me?" phase when they are first injured. They ask themselves questions like, "Why did this happen to me?" I always treated everyone fairly and did what I thought was right! So, why have I been singled out for this unfortunate thing to happen?" Or you may be saying, "I am being punished for all the wrongs I have done before my injury." Some patients bargain: "I promise to lead a good life from now on, if only I can be allowed to walk again." A very good book by Harold S. Kushner, When Bad Things Happen to Good People, describes these feelings in more depth. Regardless of what conclusions you come to about why you were injured, you must reach some sort of conclusion and psychologically put the issue aside and look toward the future.

  Different people accept change at different speeds. The process of accepting change is often called the "adjustment period." It is very difficult to estimate how long it will take you to adjust to your new lifestyle after being injured. What is important to you right after injury may not be as important later on in your life. The following example may help describe this process.

  Imagine yourself learning to fly an airplane. Early on, you must learn a great deal of technical information and how to operate new, unfamiliar equipment. When you first sit in the cockpit, your attention is focused on the dials, levers, gadgets, and switches on the panels in front of you. After some basic training and practice, you will progress to the point at which you can fly to a given destination and not focus all your attention on gadgets or equipment. These things move to the background, and your attention is focused on the open sky beyond.

  A similar process occurs after spinal cord injury. You first learn technical information about how your body works and how to operate new equipment like braces, wheelchairs, catheters, etc. After training and practice, you begin to focus your attention on other parts of your life.

  The speed of your adjustment is greatly influenced by your philosophical attitude toward life. Some people’s attitudes toward living are very flexible. They take each day as it comes. Others, though, are more rigid and have their lives planned for years to come. Their plans do not, of course, include a spinal injury. A good clue as to the progress of your adjustment is when you start thinking and verbalizing such statements as, "I wonder what the future holds for me?" or "I would like to know what kind of work I could be trained to do with the amount of function I still have?" or "In what direction am I headed now?"

  Believe it or not, there is a positive side. Patients who have been injured for some years have said: "Life is richer for me now than it was before I became injured because I have slowed down. I have done much soul-searching in adjusting to my injury, and as a result, I have become a more mature and appreciative person. I am able to appreciate and admire things and qualities that in the past I would have missed." No one chooses to have a spinal cord injury, but as with most things in life, there is another side of the coin.

  It is important to keep in mind that the personal and psychological issues you face will, over time, be less focused on your injury and have more to do with everyday life. The following discussion of feelings applies to emotions of crisis (right after your injury) as well as emotions that may come and go throughout your life, It is normal for people to experience a wide range of feelings after a major crisis. Anger, sadness, frustration, irritation, confusion, and isolation are common. How you feel is probably different from how others may feel. However, some people like to know that others have similar feelings. Not all those emotions are going to be uncomfortable ones! The process of rehabilitation also involves humor, pride, hope, and a sense of accomplishment.

  If you find yourself snapping at others, yelling when things go wrong or "boiling over" most of the time, know that many people experience anger. However, it may become difficult for you to work with others if that anger carries over into everything you do. A good test is to ask yourself: "Would I like to be treated the way I treat others?" If the answer is "No," ask yourself: "Who or what is getting in my way? Why am I angry?" This kind of self-talk can help you step back from a problem, cool off, and develop a positive plan of action. Also, ask others to help you stay calm by talking about problems openly, rather than letting something build up to the boiling point and exploding in anger.

  When was the last time you had a good, long, belly shaking laugh? It seems that this type of "therapy" is often overlooked or discounted, especially when you are in the hospital. Recent medical writers have discussed the positive effect that laughing has upon both mental and physical health. Norman Cousins, author of Anatomy of an Illness, discusses how he has used joke books, funny movies, and other forms of humor to help improve his ability to combat illness. Certainly, laughing is no "cure," but it can help you deal with difficult problems, and it usually sets up a positive mood.

Some suggestions to help you find humor are:

• Spend more time with friends who make you laugh.

• Go to a bookstore and look at joke books or humorous note-cards.

• Read newspaper comics or comic books.

• Rent a video recorder (with some friends) and watch a funny movie.

• Start a joke contest.

  It is very common for someone to feel intense sadness after a major loss or significant change in health, This is similar to the grief you might feel when someone close to you has died. Some people express this sadness with tears, withdrawal, avoidance of the "usual routine," or talking about the sad feelings with a close friend. These are normal, common reactions. However, when these feelings seem to be overwhelming, persistent, or hopeless, you should consider getting help in dealing with your sadness.

  The main differences between grief and significant depression are that depression is often accompanied by hopelessness, a sense of "giving up," physical exhaustion, trouble sleeping, and a change in appetite. Try talking to someone close, thinking about something positive in your future, or maybe setting out to do something enjoyable (like listening to a concert, having a special dessert, or reading a good book). If you feel like "it’s not worth trying," then talk with a member of your rehab team about those feelings. You can get some help.

  How you feel about yourself is very important, especially in a rehabilitation setting. It influences how you look, talk, and act. Think of someone you know who is very proud and confident (not false pride). How do they look and act? When you feel good about yourself, other people will know because you care enough to groom well and present yourself nicely to others. This feeling starts when you tell yourself: "I am worthwhile as a person." Sure, you have faults, but you have some unique qualities as a person. You can learn to feel good about those qualities and that will begin to help you improve your sense of pride. A recent book called A New Guide to Rational Living by Albert Ellis and Robert Harper describes specific ways of improving and maintaining a positive sense of self-esteem and pride.

  Having to try new ways of doing things can be both frustrating and confusing. First, try to identify the source of frustration. If you can identify a person, talk with that person about the problem as openly as you can. Clear communication helps! If talking about things makes you more upset, ask for a "third party" to help out or try to use some relaxation activities before you talk. Being calm and relaxed can help!

  Sometimes you can identify why you are frustrated, but you can’t figure out how to improve or change it. Ask for help! Another person can help you brainstorm," which may lead to a solution, or you may find a way to stay relaxed in the face of some very frustrating situations.