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.