Life on Wheels (38 page)

Some people say that, at the moment of their disability, they died. The person they were was gone. The natural response to loss is grief. You grieve for the loss of your former self—lost plans, lost capacities, lost relationships. Whether or not these fears come true, the feelings are real and merit attention.

Ann Marie Fleming, a rehabilitation psychologist, observes:

There are a number of stages following a recent disability that can elicit more feelings of loss and grief. After dealing with the injury itself, you might face disappointment about how much recovery you accomplish in the initial months. When you are released from hospital care or rehabilitation, you will face certain limitations in the outside world, such as not being able to easily go wherever you want. Relationships will change. Until you move through these milestones and face these losses and changes, it will be more difficult to redefine yourself and replace those lost parts of your life with new activities, interests, and relationships.

Grief is part of the healing process and diminishes over time. With a new disability, you might well experience a deep, immobilizing grief over being injured or discovering you have a progressive condition of some kind. But it will pass, if you allow yourself to mourn. In time you might continue to feel a sense of loss about your disability, but says Carol Gill:

There is great social pressure not to grieve, or at least not openly or not for long. Social norms do not encourage vulnerability, particularly for men. You may already be feeling dependent on family or friends because of your disability, so to also need emotional support can feel like you are demanding even more. Because you care about how your disability has affected loved ones, you naturally want to be strong for them, to not cause them further pain by having to watch you suffer more. Seeing you cry can raise great fear—that you are not adjusting well or that you will continue to be dependent, maybe increasingly so. But if you need to cry, do. Your loved ones may have just as much a need to cry with you. Irving Zola wrote about people’s fear of crying:

Some features of early disability and rehab can understandably lead to angry feelings. The future can seem ruined, you have to submit to the care of strangers, who often must perform invasive, undignified medical or personal care procedures—sometimes with a cavalier attitude. This often feels like a loss of control and dignity. These feelings need not necessarily occur, but you might have thoughts, such as:

This isn’t fair.

Why did this happen to me?

It was my fault. How could I have been so stupid to let this happen?

It was their fault, and I will hate them forever for what they did to me—or didn’t do to protect me.

I will never have the life I wanted, so nothing can be okay now.

You have the power to decide how to express the anger, and how to face the source of it so that you can move on with your life. It’s exhausting to go through life angry.

You will also find yourself in situations that will likely arouse anger. There will be people who will speak to your companions on your behalf rather than directly addressing you. You might be left waiting for the wheelchair you need because your insurance is refusing to pay. You might be trying to find an apartment to rent and discover how few meet your access needs. The list goes on.

If you use a wheelchair, your anger—no matter what its source—is often seen as bitterness about your disability. Carol Gill explains:

Even if you never see people from these encounters again, they might interpret your behavior as bitter—the “angry cripple”—another widely held social stereotype. Learning to manage anger will not only save you a lot of trouble, it will help foster an accurate perception of people with disabilities in the broader community. Managing anger does not mean keeping quiet. It means recognizing you are angry before your anger gets out of control and knowing that you have a choice about how to express it.

When you are angry—for whatever reason—you might feel like screaming, throwing things, or hurting yourself or others, actions most people associate with anger. Since these expressions are not socially acceptable, many people will instead suffer in silence, repressing their emotions. But anger that is held in has a way of finding its way out, often in subtle ways you may not notice. You might begin to be more cynical or sarcastic, or more of a tease—which can be a disguised form of attack. You might begin to drive more aggressively or start hitting the keys of your computer keyboard harder. Many people with disabilities throw their legs—such as while getting into or out of bed—or fail to be as gentle as necessary in bowel and bladder management. These subtle ways of venting pent-up anger can be harmful to you.

Fortunately, there are healthful ways of expressing anger, although they may take practice. For instance, you can talk about your anger with people you trust, making it clear that your anger is your experience and not about them—that you need to vent. This paraplegic man in his 20s, now a social worker in a major rehab center, describes learning that lesson the hard way:

When you’re feeling explosive—and not in the mood for a heart-to-heart chat with anyone—you can channel your anger into some physical activity. If you’re able to exercise, that can release a lot of angry tension. Other ways to physically release anger are to throw darts or blow up balloons and then pop them, all the while reciting the reasons for your wrath. Sometimes your only outlet is your voice. If it helps you feel better, go ahead and yell, but make sure anyone in hearing range knows that you’re not in danger—nor is anyone else. Or you can sing. As strange as it sounds, singing when you’re angry not only releases energy, but makes you feel better. You can even make up your own angry words to popular melodies. Use creativity as an outlet for anger that works for you.

Anger doesn’t have to be full blown. Living with a disability can make your life harder at times, and being frustrated is a logical reaction.