THIS SPINAL CORD INJURY HEALTHCARE INFORMATION IS FROM THE CHARLOTTE INSTITUTE OF REHABILITATION (CIR) SANTA CLARA VALLEY MEDICAL CENTER (SCVMC)

The following information is geared to educate persons with spinal cord injuries and anyone else who wants to learn about spinal cord injury. Much of the information is based on the CIR/SCVMC Patient Notebook which each patient with a spinal cord injury receives during his or her hospital stay.. 

A Word for Family and Friends --When someone has a spinal cord injury there can be many changes in the life of their family and friends. There is no one "right way" to feel. Every person and every family will have their own way of dealing with the injury.

There are some feelings that most families and friends go through. You may find that for a while you have a hard time believing what has happened. You may feel very angry and sad about the injury. Sometimes family and friends worry they could have done something to have prevented the injury even though you could not have prevented it. You may feel all of these things at different times or you may not feel any of them. How you feel is not a problem, unless you find it stops you from doing the things you need to do, like going to work or coming to visit at the hospital.

It is important to talk to someone you are comfortable with about any feelings you have about your situation. You may wonder who'll look after your children and do the housework. You may wonder what things will be like at home when the person with the injury leaves the hospital. You may feel there's just too much going on for you to deal with. You may be very tired or very angry. Talking about feelings like these is very important. The social worker is a member of the rehab team who is especially available to discuss your concerns, but you can talk with anyone you feel comfortable with. You can talk to anyone you are comfortable with, such as a therapist, a friend, a nurse, a social worker, or family member.

There are things you can do to help the person with the spinal cord injury: visiting and calling to let them know you're thinking about them is helpful. Meeting your own needs for rest and fun is also important. If you don't meet your own needs, you can become so tired, you can't really help the person with the injury. It is important to let the person who is injured know that you're thinking about them and will be there for them. You need to learn what they can do for themselves and what they need help with so you give the right kind of help.
Parts of the rehabilitation (rehab) program may be hard for you. Rehab teaches patients to do as much as they can for themselves. It may be a hard, slow struggle for patients to do something like get themselves dressed or eat a meal without help. You might feel as their friend or family member that you should help them. How will you feel if a nurse or therapist tells you to wait and let the injured person do it without help? It can be very hard to watch someone work hard to do something you could easily help them do. Try to remember that they will feel great when they can do it on their own. Remember too, the more they can do on their own, the less help they will need at home.

It is important to talk about any worries or concerns you have. Anyone on the rehab team will be glad to talk to you. If you are not sure who to approach about something, talk to your social worker.

A WORD FOR YOU

"Maybe it's not really that bad."
 "I'll wake up and find out that this is a dream."
"I don't understand how this happened."
"What am I going to do with myself?"

Your time in the hospital will be spent exercising, going to education classes, and learning how to care for yourself so that you can stay healthy. You will also have long hours to think about yourself, your family and your future. Both exercise and quiet thinking time are central parts of your rehabilitation. Survival, staying healthy, and staying out of the hospital is very much related to your feelings about yourself and the future. Most people wonder if they have the inner strength to make it through just the rehabilitation experience hoping that the future will take care of itself. Many people feel as if they are on an emotional roller coaster.

Crying, fear, anger, irritation, resentment, sadness, jealousy, hopefulness and determination are all common emotional responses to the injury. These are natural and normal responses to an injury that was unexpected and life-threatening. It is also natural to feel at times as if you are grieving. You have experienced a loss. The loss of how your body was, plans, hopes, dreams that you may have had about your future.

There are some things that you can do to help you deal with your situation.

First, do not deny your feelings, however, do not let them interfere with your learning how to care for yourself. The responsibility for staying healthy, doing your daily care routines, continue to be yours whether or not you feel sad or depressed. Recognize that sadness, anger and hopefulness are positive parts of your successful recovery.

Second, choose realistic goals for yourself and discuss these goals with your rehabilitation team. Choosing goals helps you to feel as if you are once again in control of your life. Choose goals that you can see results in a short time. For example, if one of your goals is to relearn how to dress yourself by the time you leave rehab and someone else is dressing you now, goals that you may set for yourself may be: 1) to ask your OT when can you begin a dressing program, or 2) by the end of the week, put on your shirt alone.

Third, listen to your family. You are not alone in the process of grieving, hoping and healing. You and your family are going though this experience together, but your perspectives on what is happening may be different. If you are married or have a long-term relationship, your spouse or significant other's worries may not be the same as yours. Be open to listening to them. They may have difficulty talking with you about these feelings. They may feel as if they do not want to burden you with their feelings. They may feel as if they are alone or have been abandoned because of your accident. Talking with them helps them feel supported by you. Your family may have difficulty allowing you to become more independent as you become confident in handling yourself. Encourage your family to attend SCI education classes. This will help them to learn more about your care and reduce their anxiety about caring for you.

Fourth, ask to talk to someone who has been there before. SCVMC and CIR have volunteers who have had an SCI who can talk with you about their adjustment process. Use this resource.

Fifth, if you begin to feel so overwhelmed by your feelings that you want to hurt or kill yourself, then you need to talk with a mental health professional on a more consistent basis. Do not hesitate to mention these concerns or feelings to your nurse, or physician. They will contact a psychologist or social worker to help you work through your feelings of depression. It is important for you to know that most people with an SCI do not like it, but manage to accept it as a fact of their lives. They are able to create a new life and lifestyle for themselves. They, like you, have had to struggle with themselves to see that they and their family have a future they can and do enjoy.

SCI