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SPINAL CORD INJURY: GRIEF AND DEPRESSION DURING REHABILITATION PROCESS
How do you feel when reality begins to sink in and you are confronted with so many losses, changes, and disruptions? Many people experience a sense of grief in the wake of becoming disabled. Sadness, unhappiness, feeling “down” or “blue” are normal responses to any loss. With the onset of a physical disability, many people also feel inadequate, useless, and unattractive, and suffer a loss of self-esteem or self-worth. Added to the impact of the physical and functional losses, these feelings can lead to a downward spiral of self-pity, self-recrimination, and despair.
Various studies indicate that up to 30 to 40 percent of people with spinal cord injury become depressed. Clinical depression, or depressive disorder, is distinguished from sadness or “the blues” by the way in which it impairs function, above and beyond the effects of the physical disability itself. Symptoms of a clinical depression include changes in sleep and appetite, loss of interest or pleasure in most activities, feelings of worthlessness or guilt, frequent crying spells, social withdrawal, suicidal thoughts, and a decreased ability to care for oneself. Depressive disorders are very common and highly responsive to treatment with psychotherapy and antidepressant medications. If you or your family thinks you may be depressed, discuss your symptoms and feelings openly with your physician, psychologist, or social worker. You can then get effective treatment and avoid any disruption in your rehabilitation.
Depression can become a fatal illness. The risk of suicide is more than five times greater for people with spinal cord injury than for the general population. The first three years appear to be the time of greatest suicide risk: about 80 percent of all suicides in people with spinal cord injury occur during this period. Early recognition and treatment of depression and prompt evaluation of suicidal thoughts can help prevent suicide.
If you are having any thoughts about hurting or killing yourself, talk about them immediately with your doctor, psychologist, nurse, or other health care provider. Your doctor may want to consult a psychiatrist or psychologist to determine whether you are clinically depressed and whether your suicidal thoughts pose a serious risk. Being open about your thoughts is the best way to get proper treatment. Talking about your feelings will also help you sort them out.
While one should err on the side of caution by considering treatment or safety precautions when suicidal ideas occur, it may be reassuring to know that not all suicidal thoughts are necessarily dangerous or pathological. For someone confronted with complete quadriplegia, dependence on a ventilator, and the need for assistance twenty-four hours a day, thoughts such as “I don’t know how I can live like this” or “How can life be worth living in this state?” may be quite reasonable. And thoughts such as “It would be easier or better if I were dead” might arise in individuals without the slightest intention of actually hurting themselves.
Speaking these concerns aloud has another advantage: it will prompt the rehabilitation staff to teach you how people do live with quadriplegia. They can discuss and find answers to your particular questions about how to get through the day, how to improve your experience of life and make it meaningful to yourself and others. And sharing concerns with loved ones gives them the opportunity to validate your worth as a person and allows you to search for solutions together.
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APPEARANCE OF PEOPLE WITH SPINAL CORD INJURY: LOOKING DIFFERENT
Our culture puts a premium on conformity and physical attractiveness, and children soon learn the social value of fitting in and being pretty or handsome. Spinal cord injury makes someone different, no matter how much of a conformist he or she was before. The injury is often accompanied by muscular atrophy or limb contracture, or by “appendages” (urine collection bags, leg braces, corsets) that can make a person feel unnatural and unattractive.
Self-conscious about physical appearance, an individual may withdraw from social opportunities – turning down offers of visits from friends or co-workers, choosing not to participate in recreational or social activities in the hospital, or avoiding contact with family. And this behavior may even extend toward the rehabilitation staff, with concerns about appearance hindering progress in physical therapy or making people hesitant to ask for needed help if it means greater exposure of their body to others.
You’ll be confronted with a range of responses from your visitors and family, some of which may be difficult to manage. They may be curious and ask embarrassing personal questions about your bodily functions. They may be awkward or anxious, not knowing what to say to you. They may feel frightened, guilty, or repulsed by your disability. They may treat you like a child by being bossy, loud, or overly solicitous. They may feel inadequate and awed by your efforts at managing the disability, or they may be angry, blaming you and avoiding you like the plague.
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FEELINGS IN PEOPLE WITH SPINAL CORD INJURY: POSTTRAUMATIC STRESS
In the first few months after spinal cord injury, a high degree of stress or anxiety is common. Some of the anxiety stems from the situation that caused the disability – for example, a car accident, shooting, or war injury. In the heat of a life-threatening emergency, and even during acute hospitalization, the body is stimulated by adrenaline and energy is focused on survival. Anxiety is automatically blocked from mental awareness in an adaptive trick that allows one to cope with the crisis at hand.
Once the immediate danger is over and you are settled into a safe, albeit difficult routine, you may find yourself flooded with anxiety, replaying the trauma in your mind (in flashbacks) or having nightmares with terrifying experiences of helplessness, impending disaster, and loss of control. These symptoms of posttraumatic stress are common after any emotionally overwhelming situation.
Again, talking it out helps. Research on the treatment of people with severe posttraumatic stress reactions suggests that the sooner they talk about the experience and associated fears, and the more detail they are able to give, the less anxiety they are likely to experience in the future.
Patty became paraplegic following a bullet wound to her spine. She was at her niece’s home, their children playing together, when the niece’s estranged boyfriend barged into the house and shot both women. Her niece was killed and Patty was seriously injured.
Patty suffered extreme pain and emotional distress while waiting for emergency assistance to arrive. At the hospital, she was mourning the loss of her niece, confronting her own disability, and worrying about the emotional effects of the event on her child. However, after emergency treatment and medical stabilization, her healing progressed nicely and her spirits were remarkably good.
Once in rehabilitation, Patty surprised the staff by talking frequently and in great detail about the circumstances of her injury, her niece’s bloody death, and her pain and terror while waiting to be rescued. She told the story to anyone who would listen, to the point that some staff questioned the “normalcy” of her preoccupation. Yet Patty seemed immune from the anxiety that many expected of her. She was able to focus on information about her recovery, participate actively in her therapies, and maintain supportive relationships with friends and family. She was eager to learn how to use the wheelchair, to get well, and to get on with her life.
Patty was doing spontaneously what most therapists would encourage any victim of a trauma to do – managing and mastering the anxiety by talking about the trauma and the feelings it evoked. Talking not only “gets it out” but also elicits support and validation from others. Thus Patty, more than many patients, was able to make new friends in the rehabilitation hospital. Fellow patients and staff members saw her as courageous and determined. This reinforced Patty’s sense of self-worth and diminished her anxiety about using a wheelchair, learning bladder care, and becoming independent. She left the hospital with some realistic anxiety about returning to work and parenting with a disability and, indeed, real social and physical challenges lay ahead. But Patty was not overwhelmed or disabled by the anxiety itself.
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SPINAL CORD INJURY: STIGMA
A spinal cord injury is a very visible disability. Unlike a person with diabetes or heart disease, you cannot hide your condition. A wheelchair or crutches, and any changes in physical appearance, are immediately apparent to others. The ease or difficulty of adjusting to disability depends not only on your own emotions and actions, but on other people’s reactions to your changed appearance.
How you look to others is likely to be on your mind from the early days of rehabilitation. And how you cope with social responses to your disability is important to your success in living with a spinal cord injury.
Stigma
People with visible disabilities are often stigmatized by cultural beliefs and language and treated as if their disabilities were a mark of disgrace, social inferiority, or moral or mental abnormality. Such prejudice generally arises from fear or anxiety. To ward off their own feelings of vulnerability, many people use stigma to separate themselves from “those disabled people” and thus to feel protected and secure, certain that they could never be “one of them.”
Unfortunately, this prejudice is manifest as discrimination in jobs, education, and socialization, as will become more apparent when you leave the hospital and attempt to reenter the “real world.” But even during your inpatient rehabilitation, you need to understand that fears of social rejection and concern about how you look to others are based as much in social reality as on your own anxieties and altered self-esteem. Even if you feel great about yourself, others may be awkward, uncomfortable, or frightened by your disability.
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CHRONIC BACK PAIN
When your attacks of acute back pain come closer together until they are constant or become one attack that doesn’t go away, you may have chronic back pain. Someone with chronic back pain is usually tired from the pain and lack of sleep it brings, frustrated at the poor result of treatment, and often difficult to be around.
The longer the back pain lasts, the more difficult it becomes to find relief and the less likely that a patient will be able to return to work. Remember that although chronic back pain patients are a small minority of all back pain patients, they create most of the annual expense of back pain. The sooner a patient with chronic back pain receives a comprehensive evaluation and begins treatment, the better the results are likely to be.
When your back pain is chronic, the first step is to be sure no other medical problems are present. Tests may be needed to diagnose the specific causes of your back pain.
It is common to have more than one of the causes of back pain. Among the most common complaints among patients with chronic back pain are pain in the muscles and other soft tissues, with or without trigger points, and arthritis, especially osteoarthritis. Pain that was present before an injury may be aggravated by the injury and become severe. In some patients, osteoporosis may be a factor and a fracture in the lumbar spine may be contributing to the pain.
Each of these problems has treatment available that may produce improvement in the chronic pain. Be sure that proper tests have been done to see whether surgery will be a benefit. For example, if lumbar stenosis is present, causing back pain when you walk, then surgery may be possible to relieve the pain. If total pain relief is not possible, at least one problem may be able to be attacked and resolved, removing a portion of the pain.
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Other names: Afeditab Er, Procardia
Cardio & Blood
Healthy Bones
REHABILITATION FROM HEART DISEASE AND STRESS MANAGEMENT: THOU SHALT TRY TO HAVE A SPIRITUAL SIDE.
We have come to appreciate, and now the research is starting to confirm, that having a spiritual underpinning to one’s outlook in life is a great aid to recovery. It doesn’t seem to matter what you believe in as long as you have a belief system. Science helps us to explain measurable phenomena, and there is an explosion of such knowledge in all areas. But the deeper questions remain completely unexplained. A belief system gives us meaning and allows us to trust in the world around us. When the belief system is in the form of organized religion, the structure and comfort of rituals and communal prayer also help to sustain people. Additionally, the benefits of the social aspects of fellowship and community should not be understated. In whatever form, meaningful rituals, prayer, and especially a belief system, can be sustaining in the recovery from a cardiac event and seems generally good for your health.
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SPINAL CORD INJURY: GETTING AROUND – WHEELCHAIRS AND OTHER EQUIPMENT
Mobility, or getting yourself around, is one of the first and primary tasks in rehabilitation. For most people with a spinal cord injury, this need for assisted mobility is the most obvious change from their pre-injury status. To participate in almost any activity, you must be able to get out of bed and either walk (perhaps with a walker or crutches and braces) or use a wheelchair to move around your room, around the hospital, and ultimately around your home and community.
The rehabilitation program teaches the injured person how to transfer (move from wheelchair to bed or toilet, and so forth) and how to use the wheelchair to travel from place to place. Those with very limited arm function may need an electric wheelchair, with hand, head, or mouth controls. Those with paraplegia or a quadriplegia with good arm strength can learn to propel a manual wheelchair with gradually increasing speed and accurate steering and navigation. Physical therapy includes practice in these wheelchair skills, working toward self-sufficiency.
Persons with paraplegia may be candidates for leg braces, crutches, canes, or some combination of these. In this case, you may have the option of walking at times – for short distances or to go up a few steps – but still using your wheelchair for longer distances when walking would be too slow or fatiguing.
You may have to make some important choices about how much therapy time to spend on learning to walk versus increasing your wheelchair mobility skills. While some people have little choice because of the severity of their injuries, many individuals with spinal cord injury make personal and lifestyle choices about how to move around and which devices to use under which circumstances. Don’t hesitate to discuss your options and wishes with your physical therapist and your physician. Together you can come to the best solutions for your needs and preferences. Even those with severely limited mobility (high-level quadriplegia) may have life circumstances and emotional needs that determine the choice between using a mouth- or breath-controlled electric wheelchair or letting a family member or attendant move them around in a manual wheelchair. For people with quadriplegia who are employed or require independent mobility for other reasons, power wheelchairs are often considered a “must.” Others, who enjoy the challenge or exercise of wheeling themselves or have someone who can help them get around, may prefer a manual chair. One choice is not necessarily better than another. Each person has different priorities, values, and goals.
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SOCIAL ISOLATION OF PEOPLE WITH SPINAL CORD INJURY
In the rehabilitation hospital you will most likely be separated from your family and friends for much of the time. With the busy schedule of physical and occupational therapy, visiting hours will probably be limited to evenings and weekends. Spouses who have worked all day will be tired at night. They may also be overwhelmed by their own reaction to your disability and losses. And given the lack of privacy, you may find it next to impossible to share intimate or personal feelings with your spouse or relatives. Though your family and friends may try hard to be supportive and available, you may still experience a loss of support, comfort, and closeness just when you could use it the most.
During his stay in the rehabilitation hospital, Jim found the separation from his wife and his work very stressful. His self-esteem largely depended on his role as a competent, responsible, and creative worker, and as a good provider and supportive husband for his wife. Jim felt abandoned when his co-workers didn’t call or visit him, yet felt jealous, inadequate, and embarrassed when they did. Even though his disability was no fault of his own, he felt guilty about being less than he was before. He feared that his wife would reject him, yet he pushed her away because it was too hard to admit his new dependence on her. Perceiving that he was angry with her, his wife felt she was failing to be sufficiently supportive. Afraid to express her feelings and having little opportunity for uninterrupted time with Jim in the hospital, she began to withdraw, too. Soon Jim felt miserably isolated from his wife and his work buddies.
Jim didn’t resolve these relationship problems until he’d left the hospital, but he did find a way to compensate for his loneliness. He found friendship with a fellow patient. Tony, a teenager with spinal cord injury, was scared and lonely and clearly admired Jim for his strength and progress. Jim spent a lot of free time talking to Tony and cheering him up. Because of their shared circumstances, they quickly became close friends. As Jim felt needed and valued by Tony, he was more motivated to go on with his own rehabilitation, even when he felt unsupported by his wife or “outside” friends.
Reflecting on this experience later, Jim saw how his relationship with Tony had given him a sense of purpose and meaning during the hardest part of his initial rehabilitation. Knowing that he was not alone with his disability, and that others might be even more needy, continued to motivate Jim throughout his recovery.
Like Jim, you may find talking with other patients and forming supportive and friendly relationships helpful during your hospital stay. Many hospitals have formal programs to encourage interactions among patients, but you can initiate relationships informally with your roommate, the person next to you in physical therapy, or someone you meet at mealtimes. Fellow patients understand what you are going through. Furthermore, they are available and can often serve as stand-ins for physically or emotionally distant family members during the hectic and stressful period of early rehabilitation.
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SPINAL CORD INJURY: DENIAL AND HOPE
Many people go through a period of emotional shock following a paralyzing spinal cord injury. This may include a period of disbelief (“This can’t be real, this can’t be happening to me”) and distrust in the doctors’ diagnosis or prognosis (“They must be mistaken. This is only temporary. I just need time to heal.”). Professionals often speak of this reaction as denial, and indeed some patients literally deny that they are impaired. In our experience, however, this type of total denial is quite rare. More typically, patients deny the permanence of their injuries and deny the impact the injuries will undoubtedly have on every aspect of their lives. The positive, flip side of this phenomenon is hope. Hope for recovery is normal and emotionally adaptive, even while recognizing the likelihood that some of your limitations will be permanent. And in fact, medical advances may one day lead to partial or total cures for the paralysis of spinal cord injury.
Lark developed incomplete C5-6 quadriplegia after a diving accident. Soon after her hospitalization, some of the staff asked her if she’d like to meet with a former patient who could act as a role model for her. She declined. “You don’t know that I won’t recover,” she said. “Why should 1 make myself miserable now when I don’t know what recovery there will be? I can wait two years and be miserable then!” She rejected a “disabled role model,” feeling that her denial at that point, combined with hope, helped her cope emotionally and motivated her efforts at rehabilitation.
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SPINAL CORD INJURY: COMMUNICATION WITH DOCTORS DURING REHABILITATION
For the first three months after his injury, Elliott recalls, he was told that he was going to walk. “When I first got hurt, I was fed a lot of lies. Maybe they thought I wouldn’t be able to handle it or they were doing me a favor by bringing it on slowly.” But Elliott felt that confronting the reality of his disability was just what he needed so that he could set goals and put his all into rehabilitation. “You need to know the truth, the facts. You’ve got to start dealing with it right away.”
Communicating with your doctor about these issues- what to expect now, what may be available in the distant future, and what you need to function in the immediate future – is probably the best way to develop an attitude of hopefulness combined with realism. This will help you focus on what you need to do now without taking away your motivating vision of a better future. Expressing your feelings and communicating your confusions and questions about your injury is the surest way to avoid a more entrenched denial that could prevent your getting full benefit from the rehabilitation program.
Jim hated using his wheelchair. Throughout his early rehabilitation he struggled with feelings of shame and depression about needing to use it. However, he rather quickly progressed to the use of forearm crutches, and because he had strong arms and was in excellent physical condition before his injury, he soon developed a relatively speedy and efficient gait. Jim’s doctors praised his accomplishment, while telling him that he would probably always need crutches. But Jim would not give up on his dream of walking “normally.” He became obsessed with this goal, spending many hours beyond his allotted therapy time on practicing his walking and exercising his arms, often to the point of exhaustion.
When he was discharged from the rehabilitation hospital, Jim requested a referral for several hours of daily outpatient physical therapy, much more time than most people would want. His doctor worried about lint’s denial of his limitations. He seemed to be spending all his effort on the elusive goal of “normal” walking, leaving little energy for dealing with important vocational and family concerns, Jim’s psychologist was also concerned with his social withdrawal and seeming inability to “lighten up” and enjoy himself during this period.
Working together, his physician and psychologist discovered that, in Jim’s mind, easing up on his physical therapy regimen would mean “accepting that I’m OK like this.” That meant giving up hope, and he still needed the hope of full recovery, or normalcy, in order to carry on both physically and emotionally. And being disciplined and perfectionist by nature, he needed to be absolutely sure that he’d left no stone unturned, that he’d put as much effort into his rehabilitation as was humanly possible.
The doctor agreed to prescribe extra therapy time, as long as Jim was showing progress in strength and efficiency, Jim’s psychologist helped him examine his negative self-image and fears of being rejected socially, and helped him accept the need to change to a less physically demanding career.
Ultimately, Jim gained a great deal of physical strength and confidence. He was able to use a single crutch or cane on occasion. He felt better about himself because of his persistence. As he became involved in other aspects of living and put himself in situations where people responded positively to him as a person, he became less focused on either denying or conquering his limitations. Jim no longer needed to hope for full recovery. He now had hope for living a full and satisfying life with his disability. He began to accept himself, pursue alternative job plans, and go out with friends again.
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FEELINGS OF PEOPLE WITH SPINAL CORD INJURY: ANGER
Another common, though not universal, feeling in response to spinal cord injury is anger, particularly for those injured in an accident or by violent crime. If your disability was caused by your own behavior, such as a one-car accident or diving into a shallow pool, you may be furious with yourself. If your injury is due to a tumor or disease over which you have no control, you may direct your anger at fate or at God. Or you may look for a cosmic reason for your injury, searching for the meaning of your survival rather than raging at destiny.
Your anger about the accident or other event may last only a brief period, but you will be coming to terms with losses for a longer time. Anger is a normal response to losing something precious and to the frustration and dependence that you face daily as you struggle to perform what were once automatic and easy tasks.
Unfortunately, many people consider anger an unacceptable, dangerous, or immature emotion. You may fear that anger will alienate the very people whose help you so much need. You may be concerned that anger is a sign of immaturity or weakness and fear having a childish “tantrum.” Or you may worry that your anger, because it feels so intense, will get out of control and become destructive.
Tom broke his neck in an industrial accident. He was angry not only at the careless co-worker directly responsible for his injury, but also at the entire company for not better policing the plant. Tom was generally a friendly, easygoing man, and anger was an unusual emotion for him. He wished he could be forgiving. He felt guilty about his anger and thought his angry feelings made him a mean or bad person.
Tom held in his anger for a long time, trying to pretend he didn’t feel it. This intensified his tendency to be depressed over his losses, increased his passivity and lack of initiative, and actually worsened his fear of losing control. He initially performed well in therapy, and the staff involved in his care had high hopes for his return to work, school, and social life. But Tom’s continuing inability to acknowledge and express his anger soon led to deterioration in his progress. He became extremely passive and apathetic and was unable to make important decisions. He couldn’t act on his own behalf to apply for financial assistance or stand up for himself in personal relationships.
Tom’s biggest fear was that his anger would lead to aggression. Indeed, he harbored vicious fantasies of revenge against the person responsible for his accident. But he eventually saw that he was turning this aggression on himself by giving up control of his life, that he was undermining his own recovery and being emotionally used or abused by other people. Tom’s psychologist helped him validate his feelings of anger and rage and helped him see how he could turn this anger into constructive rather than destructive action.
Tom gradually began to act more on his own behalf. He got in touch with his family, who lived out of state, and asked for their support. They responded with more frequent phone calls to his hospital room and praise for his progress. He called social service agencies and filled out applications for Medicaid, housing aid, and other benefits that he would need after discharge. He talked to his lawyer about suing his company for damages. He thought about his vocational plans in terms of what interested him, rather than what his counselor thought would be good for him. And he appropriately expressed his anger toward several people who had taken advantage of him or hurt his feelings during his most dependent and needy times.
Tom felt a renewed sense of self-reliance and empowerment. He learned that anger turned into positive action and self-expression was not dangerous. In fact, his revenge fantasies subsided as he felt better about his own life. Getting the anger out in the open had helped him avoid depression, regain control, and direct his energy toward helping himself, and had prevented bitterness from setting in.
Such disabling anger is common, but it can be avoided by expecting and recognizing anger as a normal response to spinal cord injury and by verbalizing anger openly, perhaps with fellow patients in informal gripe sessions. Anger is better expressed in words than by acting it out through hostility, withdrawal, or rebellion against the rehabilitation program.
In the rehabilitation hospital, you can also get help in expressing your anger through therapy with a psychologist, social worker, or psychiatrist. Many spinal cord injury programs provide group therapy in which you can openly share feelings with fellow patients. Pastoral counselors may be helpful in dealing with anger at God. When possible, physical activity such as socking a punching bag, smashing a piece of clay, or bouncing a ball can be an outlet for anger. And like Tom, you can find ways to take control of your situation and turn your anger into positive action. You may need to call insurance companies and employers to obtain or maintain benefits. You may need to write to foundations for financial help or apply for vocational services. Acting on your own behalf to get the help you deserve is another way to transform your anger into constructive behavior.
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FACTORS BRINGING ON MICROSOFT ATTACK: STRESS AND EXERCISE
Stress
Stress is one of the most misused words in the English language, and its precise meaning is often forgotten. It is defined in the Shorter Oxford Dictionary as a ‘demand upon energy’. This is a difficult concept to apply to the human body and not a factor that can easily be measured. Although breaking a leg is caused by undue stress, it is not this mechanical use of the word that is usually intended; more often, the implication is a strain on the mind (psyche) with a consequent decreased ability to cope. There are some people to whom stress is a challenge to be overcome who are unhappy without tension in their lives; there are others who cannot tolerate any form of stress. Most people fell between the two extremes, their responses depending on the situation. Many studies have been undertaken on stress, particularly in its part in relation to heart disease; based on these studies people have been classified into two groups: ‘A’ type and ‘B’ type. The ‘A’ type takes stress badly, almost as a personal affront, getting tense, edgy, ‘rushing about’, and exhibiting a high degree of tension; the ‘B’ type is much more relaxed and, when under stress, tends to utilize the situation in a constructive manner. It is found that type ‘A’ is almost twice as likely to develop heart attacks as type ‘B’. Comparable studies have not yet been done in migraine but personality does seem to play a large part in determining who gets migraine, and it may well be that different responses to stress are important in determining the frequency of attacks.
It is not known whether stress provokes migraine by increasing the production of adrenaline or noradrenalin or whether its effect is unrelated to biochemical changes.
Exercise
Exercise can provoke attacks of migraine but it has also been recommended as a prevention of attacks. The truth is that exercise is a particular form of stress, so that the same chemical changes take place, e.g. an outpouring of adrenal hormones which makes the heart beat faster to supply more blood to the exercising muscles.
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FEELINGS IN PEOPLE WITH SPINAL CORD INJURY: DEPENDENCE AND CONTROL
Sometimes anxiety stems from the loss of control and the extreme dependence on others imposed by the disability, regardless of how the injury occurred. Spinal cord injury caused by a vascular problem or spinal tumor (rather than an accident) may not cause posttraumatic stress, but it nevertheless results in a major loss of independent function. Basic biological functions and the simplest tasks of daily living may suddenly require the assistance of another person.
When you are no longer able-bodied, you must depend on others to take you to the bathroom, get you dressed, or help you dial the phone. You are suddenly confronted with a host of uncertainties. Will the nurse answer your call-bell in time, or will you wet the bed? Will you get help to make a call home before your wife leaves for work, or will you have to wait until visiting hours to talk to her? What if the staff doesn’t like you? What if your injury is repulsive to others? Will you still get the help you need? These uncertainties produce anxiety and feelings of helplessness in the rehabilitation hospital and often afterward, when problems become even more complex. Will my office or school be wheelchair accessible? How will I reach the files? Can I use the bathroom independently at my favorite restaurant?
Just as when you were a small child, you have to depend on the care and assistance of others for many of your basic needs. At first you may expect the hospital to take care of all your needs, but you’ll inevitably be disappointed. You’ll learn that there aren’t enough nurses, or that other patients’ needs are more urgent, or that priority is given to biological over social needs, even though the latter may be just as important to your sense of well-being.
You may feel frustrated and angry about not getting help. You may also be quite anxious and afraid – that you will never get help, that others will forget about or abandon you, or that something terrible will happen to you because you are helpless and alone (you will fall, stop breathing, or lose your sanity!). This type of anxiety, if left unchecked, can lead to disabling attacks of panic, requiring medication or other treatment. But more often, this anxiety is experienced as a humiliating regression to an infantile state of fear, frustration, and irritability, a loss of control over oneself and one’s environment, which is at best unsettling and at worst an assault on one’s dignity.
Learning to manage anxiety is an important task for every person, regardless of circumstances. Most people need some predictability and some sense of control over their bodies, their behavior, and their environment in order to feel secure and confident. We all learn ways to manage anxiety about new situations: by learning about what to expect (knowledge), developing skills to meet the new demands (mastery), gradually imposing some regularity or predictability (control), and allowing for periods of rest or “down time” when we temporarily set aside the new demands (pacing). These strategies are also helpful in coping with the anxiety generated by disability and dependence.
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PEOPLE WITH SPINAL CORD INJURY: AVOIDING DEPRESSION AND GRIEF
One factor that contributes to depression is loss of control. When you feel that your disability is an externally imposed event, something you cannot affect through your own behavior, you are more likely to feel depressed. The hospital staff may unwittingly contribute to this feeling by providing you with equipment or developing treatment goals without asking for your input, feelings, and preferences. Remind yourself that you do have choices, that you can take some control of your situation. Some things that depress you can be changed. When you initiate even minor changes, you are likely to feel less depressed and more accepting of your limitations.
Joan hated her heavy leather splints and worked with her occupational therapist to try various alternatives. They eventually developed a model for clear plastic splints and had them custom made by an orthopedic supply house. The splints proved just as effective and more esthetically pleasing. Bonnie, who has paraplegia, was disgusted with the way the outline of her long leg braces showed through her sweat pants, and she didn’t want to wear sweats other than in therapy. She decided to alter her jeans to fit loosely over the braces, creating a bell-bottom effect. This made her feel presentable for visitors and more in charge of her appearance.
Making decisions about your goals, equipment, and appearance can help you avoid helplessness and depression. Understanding that even normal feelings of sadness can affect your physical progress may encourage you to get support from friends and family and to recognize your accomplishments. Making choices, asking for change when possible, and getting support help you focus more clearly and objectively on your practical and physical needs.
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USE OF EQUIPMENT BY PEOPLE WITH SPINAL CORD INJURY
The need for a wheelchair to get around is often a source of psychological and social distress for the new user. Many people associate wheelchairs with illness, frailty, old age, or total dependence on others. They may feel embarrassed or humiliated by the wheelchair. They may feel trapped in the chair, or see it as a symbol of giving up, or feel that it makes them a “hopeless case.” Braces or crutches may inspire similar feelings of embarrassment, hopelessness, or frustration.
It’s important to talk about these feelings with your therapists and doctors and with other patients, especially if you’re depressed or reluctant to learn how to get around by yourself. If you find that trying to walk (or just fantasizing about it) has become an obsession and is requiring inordinate amounts of physical or mental energy with little useful result, the time may have come to examine some of your assumptions, expectations, and negative feelings about wheelchair use. On the other hand, wanting to have your wheelchair pushed everywhere by someone else, resisting the exercises necessary to increase your strength for independent wheelchair mobility, or frequently asking to be waited on suggest the need for help uncovering and working through your emotions.
Many rehabilitation programs provide recreational therapy, in addition to physical and occupational therapies. Recreational therapy is geared toward helping you take part in recreational, leisure, and daily living activities. These activities might include going to a sports event, learning to paint or do crafts, shopping, or going to a restaurant or other public place. Recreational therapists may also teach patients how to participate in sports (such as swimming or wheelchair basketball) or pursue hobbies with adaptive equipment.
In many hospitals, recreational therapists provide opportunities for patients to practice their mobility skills in the community before going home, through trips to malls, restaurants, ball games, movie theaters, and so on. These trips provide opportunities to use adapted transportation (such as a specially equipped bus, van, or car) and to use a wheelchair in varied environments (flat surfaces, curbs, elevators, special seating areas, restrooms). Such excursions provide first-hand experience of the obstacles wheelchair users will regularly need to face, as well as the rewards of getting around to do what one wants to do. They also provide exposure to further feelings and reactions associated with disability and “coming out” in a wheelchair.
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SPINAL CORD INJURY: SELF-CONTROL DURING REHABILITATION PROCESS
Although information about your disability may be overwhelming at first, you need to learn as much as possible about your body’s new demands and functions. Ask your doctor or nurse for information about your injury and about aspects of your function that trouble you the most – whether sexuality, bowel and bladder control, or use of a wheelchair. Concentrate on developing new skills. Take an active role in setting daily, weekly, or long-term goals. By discussing your goals with the therapists, you can more fully participate in your rehabilitation and more quickly master the skills necessary to alleviate your anxieties.
Working closely with your nurses and therapists in developing a predictable routine is important. It may be helpful to involve a spouse or family member in this process. Ask the staff to give you realistic expectations about the availability of care. Waiting for things to happen is easier when you know you’ll have to wait and don’t experience constant anticipation and frustration.
Through communication about your needs, you and your caregivers (or family members) may be able to reach workable compromises: using the telephone at a prearranged time, changing your therapy schedule to accommodate care needs or family visits, and so forth. Expressing your wishes about seemingly small, personal preferences can also be important in reestablishing a sense of control. Don’t hesitate to ask for your favorite soap, cosmetics, clothes, plants, or pictures to be brought to the hospital or rehabilitation facility. Make sure you have a reliable method for controlling the television, lights, and call-bell in your room, or arranging for regular assistance to do so.
Finally, try to pace your day so that you get some respite from the demands of your disability. Some people do this by becoming a couch potato at the end of the day – watching television, reading, or doing crosswords. Some build in a short period each day when someone else attends to their needs so that they can rest from the effort of doing everything for themselves. Another idea is to arrange for a psychological break from the hospital atmosphere, such as getting a special meal brought in, having a party in your room, or getting some quiet time with a spouse. These activities can break the single-minded focus on recovery, provide relaxation and rest, and remind you of the rewards of life beyond the hospital – thus giving meaning and purpose to your daily struggles with rehabilitation.
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Other names: Meticorten

CHEMICAL ALLERGIES: FERTILIZERS, INSECTICIDES AND PESTICIDES
As far back as the 1930s, Dr Albert Rowe, in America, noticed that some of his patients had reactions to apples which had been sprayed with insecticides. He then realized that it was not just apples, but all fruits sprayed with insecticides and pesticides that made some people ill. He coined the term ‘multiple fruit sensitivity’, and this was probably the first recognition of a problem, which has developed over the past fifty years into the multiple allergy syndrome, which now affects so many people.
People with allergies to pesticides, insecticides and weed killers should ensure that all fruit and vegetables are thoroughly washed before eating. The ideal, of course, is to eat only organically-grown produce, as this has not been contaminated by any of the above, nor by artificial fertilizers. Gardening activities should be approached with great caution, particularly with respect to the various sprays and other chemical substances commonly in use. Even the handling of lawn fertilizers should be considered, as these often contain weed killers. Dr Kenyon reports experiences with patients who had been exposed to pesticides and insecticide. In one case severe progressive brain damage occurred. Another patient became progressively deaf.
An example of the devastating results thought to be caused by exposure to chemicals, is that of Vietnam Veterans, who were exposed to the herbicide Agent Orange. This could be a typical case of an allergenic substance causing illness years after the event. Some feel tired and sick most of the time and have symptoms ranging from brain disorders to major organic disease. Others experience symptoms of fatigue, irritability and irrational behaviour. Yet this product was tested and found to be safe for humans!
Allergies to food, commonplace materials and their odours are symptoms of mysterious chronic illnesses caused by exposure to chemicals.
This observation is a result of the research by a Melbourne neurologist, Dr Malcolm Barr and a former Vietnam serviceman, Mr Michael Boland. Their paper, ‘Chemicals, Behaviour and Hyper-Sensitivity: What is the Underlying Biological Mechanism for Food Intolerance?’, was written in 1983 and investigated the symptoms of chemical poisoning, especially Agent Orange. Their research was brought to the attention of the public when the Australian newspaper (13 May 1983) reported their discussion that
… a person exposed to, and thereby made sensitive to, a pesticide might not notice anything wrong immediately but four or five months or a year later, he may be clinically sick and not know why.
As his sensitivity to the pesticide increases, the problem spreads to involve sensitivity to the fumes of his gas range, furnace and water heater, the odour of wall-to-wall carpeting, plastics in the house, the vinyl interior of his car, possibly materials he handles at work Ђ” anything from solvents and lubricants to the odour of carbonless copy paper.
Anti-Allergic/Asthma
Healthy Bones
Skin CareAs the process spreads, the degree of sensitivity increases Ђ” a smaller and smaller amount is sufficient to reactivate the problem.
Allergists have found that certain foods can cause delayed changes in the body. Dr Barr and Mr Boland linked these reactions to tension fatigue syndrome in adults and hyperactivity in children. Their research indicated that the symptoms including headaches, tiredness, depression, confusion and limb and abdominal pains were caused by eating certain foods. Recently some neurological diseases have been found to induce the above syndrome Ђ” myalgic encephalomyelitis, subchronic infectious peripheral neuritis and ciguateria poisoning caused by hydrocarbons such as Agent Orange in Vietnam. These diseases are associated with severe allergies to foods like eggs, fish, certain fruits and vegetables, drugs and alcohol. The delayed effects of this hypersensitivity sets it apart from usual allergies. Their research reinforces the point that there are many people today whose immune systems, bombarded for years with the wrong substances, now cannot cope with substances considered safe. The other point is that, individually, these substances are probably tolerable. The progressive, combined assault of hundreds of chemicals in our daily existence, however, can overload the immune system to such a degree that, sooner or later, allergies to specific substances will develop. These allergies will, quite possibly, be masked in form and difficult to detect.
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SOCIAL AND EMOTIONAL PROBLEMS OF PEOPLE WITH SPINAL CORD INJURY: HELP OF PROFESSIONALS
We’ve talked about a variety of difficult social and emotional issues that people with spinal cord injury might confront during the inpatient phase of rehabilitation. We’ve discussed some reactions to the changes in what you can do, how you get around, how you feel, and how you look to others. And we’ve looked at what physical, occupational, respiratory, and recreational therapists can do for you, and at some strategies that people have found helpful in coping with their injuries and resolving painful emotions. So far, we’ve mentioned mental health professionals only in passing (in our discussion of depression), for a couple of reasons.
Not every rehabilitation hospital includes psychological or psychiatric services as a routine part of its program, though most provide at least some access to mental health services. And while screening for psychological difficulties after spinal cord injury is helpful, not every patient needs psychological or psychiatric intervention (in contrast to physical therapy, which is a must for every patient). As we have suggested, however, mental health professionals can help not only with depression but with issues of grieving, sadness, anxiety, anger, and relationship problems. It is helpful to know something about the different types of mental health professionals so that you can get the most effective care and treatment.
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DEPRESSION IN PEOPLE WITH SPINAL CORD INJURY
Most people with spinal cord injuries don’t become severely depressed, but grief and sadness are common. Grief and mourning are normal responses to any significant loss. Normal grieving usually involves feelings of sadness related specifically to the lost person, object, or function. Crying spells, some transient sleep disturbance, and feelings of guilt or regret are usual. Normal grieving does not involve persistent and pervasive feelings of worthlessness, suicidal thoughts, or loss of pleasure in all activities. During a period of sadness or grief, the grieving person can respond positively to comfort and support from others, can benefit from talking about the loss, and can continue to perform everyday functions such as dressing, eating, and doing chores.
Recognizing that sadness and grief are normal responses to loss, allowing yourself a period of mourning, and above all talking to your loved ones about your feelings will help you work through your loss more quickly. In the rehabilitation hospital, social workers and often psychologists can help you talk about and cope with feelings of depression before they become overwhelming. They can help you sort through your reactions to your limitations and understand any initial difficulties in performing the physical and occupational therapy tasks that are part of your rehabilitation program.
For example, is your wheelchair mobility training bogged down because of weakness in your arms, because you don’t really understand the therapist’s directions, or because every time you get into the wheelchair you are filled with feelings of humiliation and inadequacy? Are you refusing the occupational therapist’s offer of specialized splints for writing because you don’t want to pay your own bills and write your own letters or because wearing the splints puts the disability “in your face” and makes you feel ugly, different, and depressed? Are you asking for help with dressing yourself because you haven’t yet mastered the techniques for independent dressing, or because you’re too depressed to put forth the energy, or because you can’t express your need for social contact except by asking for this type of assistance?
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MIGRAINE HEADACHES: EVENTS AND CIRCUMSTANCES THAT TRIGGER AN ATTACK-HORMONES, HORMONAL CHANGES, AND PREGNANCY
Many women appear to experience migraine more intensely at times of hormonal
changeЂ”menstruation, ovulation, menopause, or at the beginning or just following pregnancy. It is known that female hormones, either those occurring naturally (endogenous) or those ingested (exogenous), have emotional as well as biological influences upon the body, and about half of the women patients who have migraine believe that their attacks occur most frequently just
before, during, or soon after their menstrual period.
Most women with migraine who take birth control pills or other female hormone preparations experience more frequent and more painful attacks of longer duration. When these agents are withdrawn, there is often a dramatic improvement in the patient’s condition. Occasionally women will experience an ameliorating effect from these drugs.
It is our opinion that women with migraine, particularly the classical form, should not use birth control pills or other female hormone preparations unless there is an extraordinary medical reason to do so. Stroke and other serious illnesses occur more frequently when these substances are taken. Accumulating evidence suggests that the inconvenience encountered by not taking the pill may be worthwhile. When advised to discontinue birth control pills, some of our patients state that this action will succeed only in creating one “headache” in place of another!
Pain Relief/Muscle Relaxant
Women’s Health
Healthy Bones There is an urgent need for additional scientific evidence regarding these issues. Learning a way to determine in advance which people are most apt to develop serious complications is particularly important, and until the evidence for or against the use of these hormones is conclusive, restraint is essential.
Pregnancy has a varying effect on migraine headache. There is a good chance that preexisting migraine will markedly improve after the first three months of pregnancy but return soon after delivery. However, some women with preexisting migraine experience a worsening throughout pregnancy, and still others say that at delivery, or the days immediately following delivery, their migraines first began.
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