FEELINGS AND REACTIONS IN SPINAL CORD INJURY

The Patient

Family and Friends

• The Grieving Process

THE PATIENT

     Patients consistently report that it helps to talk about their feelings. If you talk to the members of your rehabilitation team, your family, and friends, they can help you more. It's hard for them to know what you're going through if you don't tell them. Some people find it helpful to talk to others who have gone through similar experiences and to hear how they handled them. But it is understandable that sometimes you don't feel like talking about it. It takes time learning new ways to care for yourself, and it's frustrating, but gradually you will find that you're getting in charge of your routine. Rehabilitation is a day-by-day, step-by-step process. If there's something you can't do for yourself, you will know how to instruct others to help you.

     The important thing is to remember that despite all the ups and downs, the disappointments and frustrations, you will make it. Eventually, you will be able to take charge of your own care. Your rehabilitation team, family, and friends want to help you overcome the hurdles and reach the point where you are ready for life outside the hospital. You will only achieve your highest level of independent functioning if those around you are committed to your success.

Remember:

• Do not be afraid to ask for and/or accept realistic help from others.
• Use positive thinking, such as "I can," and educate yourself in positive ways.
• Set realistic goals for yourself, and evaluate these goals from time-to-time
• Be willing to try new things - things you have not have done before your injury and new ways of doing old things.
• Involve yourself with positively-oriented peers who have SCI and wheelchair sports programs.

FAMILY AND FRIENDS

SCI is traumatic to both patients and their family and friends. Everyone, including the patient, may feel frightened, anxious, confused, and even numb. It is common, at first, to feel both relief that the patient is still alive following the injury, and shock at the implications of the injury. From the beginning, it is important for everyone to ask members of the Rehab Team any and all questions they may have. The more everyone understands about SCI, the less afraid everyone will be.

THE GRIEVING PROCESS

     SCI can be so traumatic that most patients and their families and friends go through the four stages of the grieving process. Each stage is normal and necessary to experience before progressing to the next stage and completing the process.
 

Stage 1: Denial is a common way of coping in the beginning. Many people try to deny the seriousness and permanency of SCI, but remaining in this stage can slow down or prevent rehabilitation.

Stage 2: Anger and Frustration is also common among patients and their families. They see themselves as victims and are hostile to others because they are seen as having caused the injury and/or unable to "fix" it. The more everyone learns about SCI and works with other members of the Rehab Team, the better everyone can deal with these feelings.

Stage 3: Depression and Withdrawal can follow feelings of anger and frustration. As patients and their families learn about and how to cope with SCI, they may become withdrawn from others in their community and experience loneliness and isolation as a result. It is very important for patients to seek out and join peer groups of positively-oriented SCI patients, and for families to seek out and join support groups.

Stage 4: Adaptation occurs as patients and their families come to understand and accept what cannot be changed or "fixed". As everyone adapts, the highest possible quality of life becomes possible for all.
 

Remember:

• Be involved and supportive in every stage of the rehabilitation process of your loved one. Even the best medical care is incomplete without your loving concern and encouragement.
• Learn as much as you can about your loved one's care and therapy.
• Do not be afraid to ask for and accept realistic help from others, especially with the "little things" like picking something up at the store or fixing a meal.
• Do not keep everything inside. Each family member needs someone they can talk to, such as a member of the clergy, a social worker, a friend or a professional counselor, and someone they can turn to when they are having problems, such as a member of the Rehab Team or a support group.
• Always be honest, open, and patient with your loved one.