Life on Wheels (43 page)

Another source of emotional support is a support group where people share the experience of disability. Group members can honestly say, “We know how you feel.” It is a chance to meet with people who share your experience. Whether you need someone to understand and relieve your fears about the future, recommend a helpful product, or share ideas for dealing with insensitive strangers, group support can be a wonderful resource. You can find support groups in your city or on the Internet. Many rehab hospitals have support programs that include peer volunteers.

Professional counseling is another option for emotional support. Going to a psychologist does not mean something is seriously wrong with your head or that you aren’t smart or strong enough to get through rough times on your own. A professional counselor can save you unnecessary distress by helping you understand yourself better and see a disability as a part of your life that offers opportunity as well as challenge. (You may have to shop around a bit to find someone with whom you feel comfortable. Don’t be discouraged if the first counselor you visit doesn’t seem right for you— it’s worth it to keep looking.) Counseling is absolutely confidential, providing a safe “container” for you to explore your thoughts and feelings. So well recognized is the importance of adequate emotional support immediately after onset of the disability that psychotherapists are now commonly included as part of the rehab team.

There are circumstances when it is extremely important to seek out the services of a psychology professional. If you are suffering from chronic depression or having thoughts of suicide, the sooner you talk to a professional counselor, the better. In these situations, human beings are too emotionally distraught to be of much help to themselves, and nonprofessionals don’t have the necessary training. Being depressed or suicidal is nothing to be ashamed of—although it will probably feel that way. Don’t hesitate to contact a counselor.

Change is the one constant in life. A disability—whether acquired at birth or later in life—is one heck of an exercise in adapting to change. Being injured means instant and intense adaptation. Being disabled at birth means adapting throughout development, with changing issues in adolescence and as you become increasingly socialized outside of the family. A progressive condition like multiple sclerosis or amyotrophic lateral sclerosis means a continuing process of adapting as the effects of the disability progress, sometimes very slowly. Even people with spinal cord injuries, once thought to be a stable condition after the rehabilitation process, face changes in levels of impairment as they age.

This quadriplegic woman in her 40s is finding that she is being called upon to make new adaptations she didn’t expect to face:

Part of adaptability is the ability to create an environment for yourself in which your disability does not unduly limit you. In many ways, the disability itself is not what “handicaps” you. It is when you can’t get up the steps or through the door that you become disabled. You can create more psychological security for yourself by creating an environment that does not unnecessarily limit you. In
Missing Pieces
, Irving Zola asks:

Self-advocacy is a critical skill in this process of finding your place in a life on wheels. The very act of pursuing your needs and asserting your rights is itself psychologically supportive. Although Professor Zola’s suspicion that some people give up may be true, it need not be. Your resolution of anger, comfort with your identity, gradual release of denial, and the entire process of adaptation—your emotional reality—relies on addressing your physical environment, as well as remaining intellectually stimulated and spiritually curious.

If there is one central lesson that the experience of disability has to teach you, it is how remarkably adaptive we are as human beings. Some people might have fewer obstacles than others, but chances are you can do more than you think you can.

The capacity to adapt seems to be related to age. Rehab psychologist Ann Marie Fleming sees that children tend to make relatively easy adjustments. Their lives are all about constant change, and their adaptation skills are well practiced. The older a person is, the more difficult it can be to accept a major change such as disability.

As we age, it becomes harder and harder to accommodate major lifestyle changes. We become more fixed in our ways, and we just plain get tired out with the weight of our lives behind us. For some people, the shock of disability can jolt them from a self-destructive path. Fleming states:

Disability is a chance to be reminded of the universal truth of the frailty of being human. The struggle to adapt to the many demands of disability can increase your empathy for all people, as is the experience of this woman with Charcot-Marie Tooth disease, a form of muscular dystrophy:

You will inevitably consider how you previously felt about people with disabilities. You get to revisit your attitudes, now that you have joined the club. Carol Gill sees an advantage in this, saying:

Disability happens to family members, too. They will also have intense emotions and adjustments to make and, in the early stages, be faced with a significant disruption to the daily pattern of their lives:

Spending time at a hospital or rehab center

Dealing with doctors and insurers

Communicating with other family members and concerned loved ones

Finding solutions for a variety of needs in preparation for home-coming day, not the least of which is making the home accessible and livable

For acquired disabilities in which there is some potential for recovery, family members can become invested in hope, which is also a form of solace that can help them maintain their daily lives with the added emotional and practical demands. Says this young man, spinal cord injured at the age of 18:

Family members could be afraid to bring up certain topics for fear of upsetting you. Let them know how open you want them to be with you. It might fall to you to draw them out, to start the ball rolling on discussing a sensitive topic related to your disability. Your relationship with them may need to adjust.

Professionals generally advise families not to withhold what they feel. If their injured relative makes them angry or very sad, they might fear that revealing these feelings could overwhelm their loved one. Social worker Joan Anderson of the Santa Clara Valley Medical Center in California writes:

Family members, especially parents, often feel they need to exercise some control, to make sure that you are being taken care of. It might be that they feel the need to accomplish something, since they can’t make you well. Regardless of the age of their loved one, the impulse to revert to the caretaker mode of early parenting can be strong.