Life on Wheels (6 page)

The doctor’s goal is to help you be in the best possible health so you can get the most out of rehab. There is a tremendous amount of research and information for a doctor to keep up with to bring the latest resources to bear in supporting your rehab effort. The quality of your relationship with the doctor has tremendous impact. In the past, doctors were likely to play a very strong leadership role, taking little stock of the personal experience of their clients, making unilateral decisions, or at least making it difficult for someone to disagree. To this day, many people find themselves intimidated by their physicians, afraid to speak up, hesitant to challenge them. But this attitude is changing, both on the part of people who now prefer to be “clients” or “consumers” rather than “patients” and on the part of some doctors exploring a more holistic approach.

With restricted budgets and pressure for hospitals to work efficiently and profitably, doctors’ schedules are very tight. As much as they might want to be good listeners, or take time to learn more about your life and experience, they are hard pressed to be able to devote the kind of time you might prefer. You can help by being prepared with questions and being informed. Take advantage of therapists, nurses, other rehab consumers, and a rehab center library, if one exists.

Doctors are human. They aren’t perfect. The nature of your relationship with them should not be one of absolute trust but one of respectful cooperation. If you suspect someone is not competent or fully committed to your needs, pursue your right to ask for someone else. If you are not getting what you need, or if you can tell that something is not right, speak up. Statistically, mistakes are far more the exception than the rule, but they do happen.

Perhaps more than any other team members, the nursing staff will be the people with whom you have your central relationship. Rehabilitation nursing is a certified specialty, supported by organizations such as the Association for Rehabilitation Nursing and the American Association of Spinal Cord Injury Nurses. The associations provide continuing education required for certification. Rehab nurses are trained in being able to recognize and attend to the unique needs of people with disabilities. Nurses in a general hospital might not ever see autonomic dysreflexia, deal with pressure sore management, or understand the respiratory needs of someone with postpolio syndrome, for instance.

Rehab nurses play many roles. They treat. They advise the client, the family, and the physician. They teach. They interact with and support the rehab team. They are crucial to the rehab process, since they have regular contact with you and because they are generalists, able to recognize any of many different needs you might have. They also direct the nursing aides who do much of the hands-on daily work, such as assisting you with bladder and bowel care, washing, or dressing. The rehab nurse might also achieve the most trust and connection and, so, be a source of emotional support, possibly fielding personal questions the client is uncomfortable asking.

The family dynamics and emotional experience of early disability are best supported by professionals experienced with the complex set of adjustments you are called upon to make in rehab. Nurses can be a source of tremendous emotional support.

Therapists who specialize in rehabilitation must strike a balance between driving you to work hard and keeping an upbeat and friendly atmosphere. Their job is to encourage and support you in applying yourself as fully—and enjoyably—as possible to the process of rehabilitation.

There will always be some people who don’t connect or a therapist who is difficult to work with, as this paraplegic woman found.

But the following view is probably more typical.

Your therapy will be customized to your needs and the issues of your disability. Someone with MS will have a very different program from someone with a spinal cord injury, as explained by Cynthia Bishop.

The ranks of specialized therapists include physical therapy, occupational therapy, respiratory therapy, recreation therapy, and speech therapy. These people are experts who have worked with other people in your situation and have seen them master the skills they will be teaching you.

When you first enter rehab, some goals might seem unattainable—whether lifting yourself easily in and out of a wheelchair or becoming accustomed to breathing with a ventilator. These doubts are a common and normal reaction, particularly to people with sudden trauma, with its dramatic change in physical capacity.

Your rehab program will be based on goals developed by the team along with your input. Members of the team are unlikely to suggest a course of rehab work unless they think that your medical status allows for it. They will have seen others in situations similar to yours and know from past experience what is possible. They might know that you can go beyond limits that seem unreachable to you. They will ask you to put a certain amount of faith in them—and in yourself.

Therapists must set reasonable goals for you, day by day, and let you know what to expect. You might make very gradual progress that seems too slow to you but is expected for a person in your situation. The better you understand the expected pace of your rehabilitation, the more you will be able to celebrate your advances, instead of pressuring yourself and feeling that you are failing because things are going too slowly. As you give your therapist honest feedback about your experience, you can work together to adjust your program as you go.

The hard work you will do (read “be driven like a slave to do”) while in rehab makes a tremendous difference in your range of options and degree of independence, but rehab only gets part of the credit. Its contribution is of no use unless you choose to make the most of the experience, use the tools and skills offered, and continue your own process of growth and evolution after you leave. This woman with C6/7 quadriplegia observes:

Many rehab centers will include you in team reviews of your case. How much you participate is up to you, but it is your right to ask questions and have your say. Of all the members, you are the most important person on the team.

Your main role is the hard work you will do, which offers you the chance to reach your optimal ability and, in the process, gain a sense of the range of possibilities open to you. People often discover that those possibilities reach much further than first imagined. Novelist Reynolds Price, after being paralyzed by cancer, describes his rehab experience in his book,
A Whole New Life
:

You will also need to advocate for yourself to make your hospital/rehab stay as humane as possible. If you find yourself faced with a staff member who won’t or can’t take the time to listen, choose an ally who has time to campaign for your needs. It can be helpful to talk to patient advocates, social workers, peer support volunteers, psychologists, or simply someone who has taken a personal interest. Any one of them might prove to be your most effective champion.

Your family plays an important role in your rehab experience and influences your attitude. It is of inestimable value for you to have regular visits and to know that family members are seeing to personal business outside of the facility and that they are sharing the emotional adjustments of the rehab process. Your disability, in fact, has happened to them, too. Rehab staff know the importance of family involvement. Rich Patterson Peer Support Coordinator at Santa Clara Valley Medical Center notes:

Family members also need to learn the line between reasonable expectations and hope. This is a delicate line, says Patterson:

A disability experience is a potent test of the quality of family relationships. It reveals the depth of commitment and ability to adapt to a crisis. Family response can express itself in extremes. Christopher Reeve’s wife, Dana, was a model of being entirely involved in his support. She affirmed from the start that she would stay with him for the rest of his life. On the other hand, according to Margaret Nosek who researches women with disabilities at Baylor College of Medicine:

While in rehab, you are likely to get a visit from someone who had an experience similar to the one you are going through or be invited to attend peer support meetings. Although everyone’s experience is different, the chance to talk with someone who has a similar condition can be very powerful. Janie Whiteford, peer support coordinator in Santa Clara, California, explains:

Not everyone is ready to meet someone who has made the adjustment to disability. It is very common to operate on a belief in recovery during the acute stage after an injury or to feel committed to resisting a progressive disease. This quadriplegic man describes his first visit from a peer supporter:

After rehab, some people participate in outreach programs sponsored by the rehab hospital. Rancho Los Amigos has a program called Teens on Target, which also exists in other communities. Says Dr. Michael Scott:

Peer support doesn’t have to happen in a formal, organized manner. People build relationships as they encounter each other in rehab, whether inpatient or outpatient. Cynthia Bishop has seen people create close bonds: