• Working with a psychotherapist
  
• Sexuality
  
• Psychology for the family
  

The goal of the psychologist is to work with you as an ally to help change mental patterns which can limit you. In the past, you would only have been referred to a therapist if you were considered a "problem patient" or in such deep despair that staff was concerned for your safety. Present day rehab therapy takes a different view. Powerful feelings, confusion, or rebellion are widely recognized as understandable reactions to sudden disability. Rather than stigmatize people who experience extreme emotion, now psychologists work with everyone to help them deal with their feelings.

There are many possible emotional responses to a disability. Many factors come into play, including age, degree of injury and impairment, financial and class status, cultural expectations, and so on. How the disability occurred is also crucial, as peer support coordinator Rich Patterson explains:

Whether it was an accident, someone else's fault, or gang-related--this makes a big difference in how everyone responds. It's hard enough to feel that you made a stupid mistake, but when someone does something to you and puts you in a chair, that tends to be pretty hard to swallow.

Depression and suicidal feelings are common during acute rehab--although not everyone experiences them. The staff is trained to recognize behavioral signs of these feelings. Depression and suicidal feelings are treatable and generally temporary.

The overall work of rehabilitation depends on commitment--an attitude that promotes full participation and cooperation with the process. The psychologist helps you sort out what drives your behavior in ways that limit you, cause you unhappiness, or compromise the potential you can reach in the rehab process. Types of behavior that could interfere with your ability to gain from rehab include:

• Passive-aggressive behavior, in which one is indifferent to the value of what is being offered and places responsibility on others' shoulders
• Extreme dependency, in which one fails to participate proactively, and loses the chance to feel personal accomplishment
• Severe anti-social behavior, in which one possibly represents a danger to self or others

Rehab doctors and therapists know they must adapt their approach to each person according to how that person is coping. Says Dr. Michael Scott:

Everyone copes in a different way. Some people are more energetic, gung-ho and motivated. Some are depressed. Everyone does their best, and we try to motivate them and get them going. Some are able to do a little more early on, and we try to adjust for that. If someone isn't up for a vigorous weight lifting class or tires out we try to space things out to accommodate what they can and can't do.

The fact that someone is depressed or angry while in rehab does not mean they will fail to adapt to disability. Saunders Dorsey was a young attorney in Detroit when an angry client attacked the office with a rifle. Saunders jumped out of the third-story window and became a spinal cord paraplegic:

I was extraordinarily dependent. I needed twenty-four-hour attention. I wouldn't do anything. I was virtually helpless. It was obviously more emotional than physical. I was so angry, I laid there for two years and wouldn't do a thing.

Dorsey has since returned to a thriving law practice, established a successful accessible transportation company after seeing the flaws in the services he was receiving, and is living in a comfortable home with his wife and children. He just needed time before he was ready to move forward with his life.

Working with a psychotherapist

The rehabilitation period is recognized as an important time for psychological support. Psychotherapists are typically included in the rehab team. Many rehab clients have the opportunity to spend time with a therapist as part of their daily schedule, where they are free to ask questions and discuss their feelings confidentially.

Many people who find themselves in rehab will never have met with a therapist before. Those persons might feel as if therapy is being forced on them and is an invasion of privacy. Psychologists expect that some people will be unwilling to participate at first and will have negative ideas about the psychotherapeutic process.

Meeting with a psychologist means revealing intimate facts and exploring deep and often troubling emotions. Although the process can seem threatening at first, the therapist's job is to be an ally--not a friend, because this is not a personal relationship--who listens openly and explains what he or she has to offer. Psychotherapists can affirm the validity of what you are going through and help you begin adapting.

Jeri Morris, Ph.D., of the Department of Rehabilitation at Northwestern University Medical School in Chicago, writes:

The immediate goal of the psychologist is to encourage a willingness by clients to think about the long-term effects of their injury. The psychologist must get on the side of clients rather than make himself or herself their adversary.7

Thinking about long-term effects can be especially hard for people with progressive conditions, such as MS or ALS. People with MS fight hard to maintain their health. One of the most difficult moments is when it is time to begin using a wheelchair, as explained by Cynthia Bishop:

A lot of people see using the wheelchair as giving up, as giving in to their disease. We hear that over and over, "I'm not giving in to it, I'm not using a wheelchair." We have to do a lot of talking. "How does it affect your day-to-day life function? If using a wheelchair would make it possible to go to your child's Little League game--would you rather go or would you rather stay home? How about using the wheelchair at work so you still have the energy to stay up with your family when you get home, as opposed to walking at work and becoming so tired that you just come home and collapse in a heap?"

Generally speaking, it's not something that people receive warmly. We have to continue the process over several visits. We have to gently bring them to the point where they say, "Okay, I'd like to do that, I think it might be a good idea."

Most rehab centers emphasize education, offering programs on an array of topics to enhance your sense of control and sense of self. Dr. Michael Scott describes the offerings at Rancho Los Amigos:

We have a program that all patients go through called Starting Out class. Every day of the week there's a different topic. One is called Take Control, basically an assertiveness training class. It's given by one of our former tetraplegic patients, who does a great job with it. Other topics are Attendant Management, Funding and Resources, and Learning Your Rights, which is an introduction to the ADA. We let them know what the resources are and how to stick up for themselves.

Sexuality

The presence of a psychologist on the team helps foster more openness in discussing this crucial topic. You might be hesitant to bring up questions as personal as what kind of sex life you might be able to look forward to. Dr. Michael Scott describes his approach to helping people ask about sex:

Most patients are reluctant to bring up sexuality initially. They're definitely thinking about it. We use the approach of giving them permission to talk about it. I'll say, "You've had a spinal cord injury, things are different for you now, you probably have some questions, and one thing people usually want to know about is sexuality and sexual function. If you have questions about it, then please let me know." Usually they'll say, "Oh yeah, I've been wondering about that, doc."

The priority of sexuality to the person depends on many factors, including the type of disability, age, and sexual experience. Dr. Ed Nieshoff, Rehabilitation Institute of Michigan, talks about younger men with a spinal cord disability:

They're still in the grip of their raging hormones like any teenage guy, and all that energy is hard to redirect. It is very hard--and often angering--for them to have to redefine their sexuality. It adds to the pain. People think that walking again is the most important, but I'd say for most people it's about number five on the list. For a quad, first of all you want your hands back, second you want to be able to urinate, third you want to control your bowels, and then your sex life, and last of all walking. When you're nineteen, you'll take the sex before the walking!

Much of the information offered in rehab is about male sexuality. Since women with disabilities are generally not prevented from having children, the emphasis often falls on male fertility. And since maintaining erection is an issue only for men, this also tends to weigh the discussion in their direction. There is a lot of information about penile implants or injections, and harvesting sperm is now possible.

Yet women also face questions regarding vaginal lubrication, positions, bladder control, and how to attract men in a culture that doesn't encourage women to be the pursuer. Women need to hear about birth control, pregnancy, and gynecological care. Margaret Nosek has been researching sexuality in women with disabilities, and says:

I've heard from women who said they were put in groups with men and were very uncomfortable with that. They felt it was introduced at a time when they didn't feel ready to deal with it. It's just that rehab centers have people for such a short period of time now that they try to cram all this stuff in. Women need more time to adjust.

Women might have underlying issues of abuse. Their disability might even be the result of spousal abuse, which is sadly responsible for a share of brain injury and spinal cord injury from gunshot, for instance. A past history of sexual abuse will certainly be aggravated by becoming a woman with a disability. Women become more attractive targets for abuse by being in an increased position of vulnerability.

It is common for women's menstrual cycles to be interrupted for up to six months to a year after a spinal cord injury. Says Nosek:

Something seems to happen to a woman's hormone cycle. Some women have observed a relationship between how long they have been without periods after a disabling injury and problems they have later in life.

This raises psychological issues about the desire to have children--the loss of a feature which is a matter of feminine identity for some women--and anxiety about whether the cycle will return, despite what rehab staff says.

A skilled psychologist can help women begin to address these and other issues in order to achieve success in their sexuality. Nosek again:

The key is self-esteem. Our studies have shown that when women feel good about themselves, disability has no effect on the quality of their relationships. But there is so much more to study. We want to find out more about what makes women have high self-esteem.

Psychology for the family

The rehab psychologist is there to support the family, too. When you are in rehab with a traumatic disability, other family members have to deal with a lot of difficult emotions. They might doubt whether you can have a high quality of life, particularly if they have no models of people with disabilities who made the kinds of adaptations you are facing.

Initially it may be even more difficult for your family. You have something to do. You will be involved in hospitalization and rehab, getting the attention of medical staff, being visited and called, doing the work of recovery and gaining independence. Family members are often left wanting to do more, wishing they could help, and having too much time to think about what has happened to you. Your family is caught in a storm of emotional experience immediately after your trauma. Joan Anderson writes that:

Families understandably display anxiety and stress. They are confronted with a medical emergency, questions of life and death. Few people are prepared to respond to such an overwhelming catastrophic event. Patient and family are rarely able to comprehend the implications of the injury.¹

They are wanting answers to a flood of questions: "Will my family member survive? What has happened to her? What is being done to her? How do I help?" Your family might feel quite helpless. Psychologist Ann Marie Fleming says:

The family is so petrified by the near-death experience that it reels them in to take care of their family member. If they are parents, then they go back into the over-protective, hyper-vigilant mode they were in when their child was small. This is a natural reaction of anyone to trauma. I think that reversion is important. It makes them really celebrate each achievement, whether it is taking a step or going to the bathroom without a catheter. It needs to happen.

Family members also need to avoid smothering or allowing their lives outside the hospital to disintegrate, causing further stress and trauma. Psychologist Joan Anderson writes:

Families feel torn between their need to be at the hospital and their need to care for other children at home or to attend to a job. They bear the burden of the emotional crisis plus all the mechanics of reorganizing their lives to accommodate the injured family member.²

When family members are able to reach out to other families they encounter at the hospital, they can benefit from their experience and learn coping skills by example. Other families can pass down what they have learned during stages of the rehab process that you and your family might not have reached. Being able to help others keeps families from becoming too engrossed in their own trauma.

When you observe other families adapt, you can envision a new future for yourself.

Notes:

1. Joan Anderson, "Psychological Issues Related to Ventilator-Dependent Quadriplegia," in The Management of High Quadriplegia, 97.

2. Anderson, "Psychological Issues Related to Ventilator-Dependent Quadriplegia," 98