Roger L. Butterbaugh, Ph.D.
Licensed Marriage and Family Therapist
Frazier Rehab Institute, Louisville, Kentucky

This body that I've been living in since I was born, doesn't work like it used to. In fact, some parts don't work at all. I can't feel them. I can't move them. And what I've learned is that they can be heavy like a lump of clay and useless getting from bed to the wheelchair. Earlier this year, I ran a race with my cousin. Me worried? Scared to death. What's next? Who knows?

After injury and hospitalization, new spinal cord patients usually know or sense deep within that life is going to be very different than it used to be. And yet, it is difficult to know exactly what to think or how to feel because there are so many uncertainties. "Do the doctors really know or are they wrong? It doesn't really matter what they say because I've always come back from injury-I work hard. Think positive, I've got to think positive. What will my friends and family think of me? I don't want my girlfriend to see me like this. Maybe I should have died? I can't move my toes, my ankles. They must be asleep. I must be asleep. This is a dream, it's unreal."

Soon after being hospitalized, spinal cord patients are typically not sharp mentally, experience considerable anxiety or worry and do not handle their emotions particularly well. This may be a reaction to the paralysis and may be due to pain, drugs, sleep disturbances, and, in general, being in the hospital. Spinal cord patients may also have received a brain injury at the time of their injury which can contribute to mental and psychological changes even though they may be mild or short lived.

Many patients will experience body distortions because of nerve damage. For example, they may "feel" the legs bent at the knees when in reality they are straight. Some report a sense that their legs are floating. When sitting, patients may feel they are leaning to the left when in fact they are sitting up straight. Quadriplegics with a complete injury will sometimes report the sense that their body below the neck is like a balloon floating in air. Some patients will even report feeling a limb moving when it is lying flat on the bed. Patients experience these happenings because of the damage to the spinal cord. And, as would be expected, such experiences will add to a patient's anxiety, confusion, and concern.

In addition, patients will likely struggle as they realize: that they have little control over what happens to their body early in their hospitalization; discover that they have to rely on the assistance of others for even the most minor of tasks; discover that it is their responsibility to put others at ease when they visit; deal with the extreme exhaustion that comes in the beginning from even small amounts of activity; and see clearly the slow and exhaustivee work to be done in the therapies.

Is it common to think about giving up? Is it common to want to be left alone and stay in bed all day? Is it common to want simply to go home and forget the therapies? Do patients and even families want to deny or pretend the spinal cord was not damaged or that it will heal perfectly? Do patients and families want to simply go back to life as it once was and hope that will somehow happen? Do patients and families usually go through a period of grief and loss? The answer to all these questions is a resounding.

Grief and mourning are a normal, even healthy, reaction to a loss, which most people experience at some time in their lives. Working through grief and loss is the way people adjust to losses they have sustained. This adjustment requires emotionally "letting go" of something that was valued but can't be replaced. It is only after letting go that the person is free to re-invest their emotions into new things. However, letting go can be difficult, complex, and require a great deal of time.

Most spinal cord patients face not only the loss of body control and feeling but also frequently experience changes in their self worth, sense of independence, attractiveness, sexuality, mobility, and relationships with family and friends. The symptoms of grief are many and can include: sleep disturbance, low energy, loss of appetite, increased appetite, lack of motivation, tearfulness, feelings of sadness, social withdrawal, wishes for death, thoughts of suicide, anger, impatience, moodiness, longing, confusion, feelings of guilt, anxiety, loneliness, disbelief, and agitation.

William Worden described four tasks of mourning that a person needs to successfully work through while grieving.

1. Accepting the Reality of the Loss. Most would readily agree that a leg amputated due to injury or disease will not grow back. The person will be an amputee today and forever. Those facts are so very easy to see and few would disagree. By comparison, people typically have more difficulty accepting losses or paralysis from spinal cord injuries or disease because this cannot be seen easily, i.e., the patient may have paralysis of the arm or leg today but they are still attached to the body, seemingly ready to be used. Recovery, for those who think in this manner "is only a matter of getting the nerves connected and working again." Unfortunately, science and medicine are not able to reconnect nerve cells in the spinal cord nor replace nerve cells, which have been damaged from the injury or disease. And yet, it is very hard for patients and family to accept that the body has limitations healing itself and science and medicine cannot always bring a body back to health.

Patients and families struggle long and hard with this reality. For some, the struggle and disbelief continues for weeks, months, and years. Some never do accept the reality of their loss and will forever be in mourning and experience some or many of the symptoms listed above. Their emotional energy goes to fighting against the reality of the spinal cord injury/disease instead of concentrating on strengthening and using the remaining intact muscles and nerves. Those who do accept this reality, even a part of it, can then move forward to the next step.

It should be noted that some spinal cord patients do continue to hold out hope that in the future medical science will advance to the point where paralysis can be reversed. Spinal cord patients who have such hope can in fact be very healthy psychologically/emotionally if they will deal openly with the reality of their disability as it is today and deal with it constructively.

2. Experiencing the Emotional Pain Associated with the Loss. The emotional pain associated with a spinal cord injury or disease can be very intense. When we love or value someone or something, we invest ourselves emotionally in that person or object. Having control and sensation of one's body for toileting, mobility, sexual activity, and, in general, to be independent, allows one to maintain a certain life style and that is an important element in how they perceive themselves. Emotional pain is a reflection that something which has been valued or treasured has been lost.

Those who do accept the reality of their loss of control and sensation typically allow themselves to experience the loss emotionally. The emotions are often very strong and difficult to manage. Anger, sadness, hopelessness, fear and a sense of injustice are very common. As the patient and family begin to deal with these emotions, it is important to give and receive support from each other and to reach out and be open to friends, staff, and clergy. Talking, screaming, yelling, cursing, crying, sleeping, praying, biofeedback and deep breathing exercises, looking for the positive, being active, learning the truth about spinal cord injury and disease, and meeting former patients who have been successful dealing with spinal cord injury or disease are often healthy helps. Eating, watching TV, listening to music, sleeping, medications, and daydreaming may be helpful for a break from the emotional pain but can become harmful if used too often. It is important to avoid involvement with street drugs and alcohol as a means of coping emotionally. All too often spinal cord patients begin to abuse drugs and alcohol as a way of coping.

To distance oneself from emotional pain requires a great deal of energy. However, the emotional pain remains unresolved and is "stored up" waiting for release. Those individuals who do not successfully handle this task in the grief process may, over the long term, lose motivation and interest in most or all activities, withdraw from friends and family, become bitter and resentful, stay depressed, develop poor personal hygiene or eating habits, seriously abuse drugs and alcohol or deteriorate physically. Those persons successful at this step can move forward to the next.

3. Adjustment to the Environment Despite Spinal Cord Injury. Adjustment means effectively learning to deal with the world despite the changes caused by the spinal cord injury/disease. Since things are different, the typical or usual means of coping in the world may not work as they did before. That is why new approaches may become necessary. For example, a person who ran 2 miles before spinal injury after work to relieve stress will need to find alternative ways to relieve stress. A person accustomed to a varied daily schedule with irregular hours of sleep will find regularity is important for proper control of bowel and bladder. Or a person used to making plans on the spur of the moment, will soon learn that it may take time to prepare for an outing because of transportation, accessible buildings and rest room facilities. Because of limitations in mobility, people who were once good friends and had much in common, may drift apart and the spinal cord injured person will either develop new friends or be alone more often. Perhaps a person may need to learn new skills because he cannot perform his old job.

An important component of a patient's rehabilitation program is to venture out in the community and learn how it is possible to function in a wheelchair, how to appropriately ask others for a little help, and discover that the fears or discomfort of being in the community often go away with time.

4. Withdrawing Emotional Investment. The final stage of mourning involves the actual "letting go" of life as it used to be before the spinal cord injury/disease and investing energies elsewhere. For example, the person who used to play summer softball for joy and exercise, replaces this loss with another sport or activity which can be equally or almost as enjoyable. Perhaps the person learns to participate in an activity that he did prior to hospitalization but now does it in a different manner; or the person who was very "body" oriented learns to use the "mind" more for stimulation, satisfaction, and productivity. Perhaps instead of being alone as much as before, the person learns to enjoy being with others; or successful adjustment at stage four may mean that a person adjusts to a less active schedule and learns to be more comfortable with quiet time alone, at least, occasionally.

It is important when thinking about a multi-stage model of grieving that it not be applied in a rigid manner. Each person will adapt to the loss in their own manner according to their own schedule. Often two steps forward are followed by one or even two step backwards. The concern is not so much how each person goes through a grieving process but rather that they begin the process. Grieving is likely to take many months. Adjusting in general to a spinal cord injury/disease is a process that continues for years -perhaps a lifetime.

In most rehab settings, staff reaches out to assist and encourage patients and families through the difficult times they often face. It is also the patient and family's responsibility and right to ask for help when it is needed.