Life on Wheels (42 page)

In
No Pity
, Joseph Shapiro describes Larry McAfee, a 34-year-old engineering student who became quadriplegic from a motorcycle accident and was in an intensive care unit for three months. McAfee was the subject of a high-profile assisted-suicide case. He asked to have a switch installed on his ventilator so that he could turn it off; a court granted permission. After a dizzying series of bureaucratic battles regarding where he could live and being provided access to computer equipment, McAfee’s outlook changed. Thanks to the efforts of his family, other individuals, and disability advocacy groups, Larry McAfee finally returned to the community in a group home. According to Shapiro:

Assisted suicide is a controversial topic in the disability community. Some people consider it their innate right to choose their time and method of passage. Yet others feel passionately that people with disabilities are denied the support and counseling that would be afforded anyone else with a wish for suicide, reflecting society’s belief that a life lived with a disability is not worth living. Especially in the early stages of a recent disability, this is not a choice that can be reasonably made, and the first order of business should be to aggressively advocate for rehabilitation and equipment and other services that will provide for the optimal living that so many with disabilities of all kinds have proven is possible.

Each of us has our own particular take on God, the divine, and the realm of spirituality, including the atheist’s view that there is no mystical component to our lives. Your beliefs and faith can be an extremely rich source of support, with lessons learned from the teachings of your spiritual tradition, community, or leaders. Most religious traditions tell us that the challenges in our lives have meaning and that we have a capacity to survive them and move through them as a process of learning and deepening of our very sense of self.

The atheist, the reincarnationist, and the humanist equally operate from a philosophy that affirms the good in humanity, and that our purpose in the world is to bring that to bear. This is how it should be: ultimate truths being about the ultimate good and the best of what it is to be human in this lifetime. If you are going to seek guidance from your religious or philosophical community and teachings, then pursue this perspective. It is the one that points you to your capacity to continue in the face of tremendous change and pain.

Unfortunately, some people become overwhelmed by their propensity to self-doubt, which can become translated into the fear—if not belief—that God (or karma, if you choose) has punished you, that you deserve to be in the situation you find yourself in, and it is just further evidence that you are unworthy. “How could God let this happen to me?”

Such a point of view is self-fulfilling. It drains your energy away; it prevents you from being able to see any potential path to renewed life, to see your real possibilities in the world with your disability being a feature of who you are: namely, a person just as capable of living in the world with meaning, giving and receiving among the people you love.

Take care to not allow matters of religion and faith to add to the emotional demands of adapting to your disability. If those thoughts are trying to assert themselves in your mind—and heart—then make the choice to challenge them, reaching out to whomever you trust as a guide to reassert and renew the positive nature that all true religions and philosophies teach is our true essence.

In the early stages of an acquired disability, you are in a state of being overwhelmed. Your brain is limited by its very physiology—it just can’t absorb and integrate that much change and emotion at one time. It is actually necessary to exist with a narrow perspective, as a way of protecting you from having a severe emotional breakdown. Then you can begin to put your attention on the decisions and actions needed to renew your sense of balance, gaining a measured understanding of what your life is about in this new and strange context of disability, and what’s possible with it.

Postponing decisions does not mean you surrender faith in yourself. It means you have the good sense to know you’ll make better decisions when you can think more objectively—when your emotions are in better balance. This day will arrive soon.

Hope is powerful, giving you strength to overcome grief, denial, and depression. Even a small ray of hope can help keep you moving forward. Sometimes, hope may be all you have. It is only natural to hope for a significant recovery after a disabling injury or diagnosis of a chronic or progressive condition.

After a person is injured or receives a life-changing diagnosis, medical professionals are cautious about encouraging what they fear could be false hope. Every one of them has seen people suffer heartbreak when their hopes didn’t come true. Yet doctors, nurses, and others don’t want to rob you of a positive outlook or make themselves your adversary. It is a difficult balance for them to achieve. They want to foster your motivation as much as possible while at the same time protecting you from the potential for psychological trauma.

How you discuss your hopes with the medical professionals who care for you makes a difference in how you are perceived and responded to. If they perceive you as being stuck on expecting a complete recovery or cure, to the exclusion of all other possibilities, they might not want to encourage your hopes. On the other hand, if you are asking questions about possible outcomes and what active measures you can take to bring about the best possible result, they’ll be more comfortable supporting your hope for a degree of improvement even if they personally doubt you might achieve it.

At its best, hope will spur you to do whatever is necessary to make life as good as possible for you, including participation in the rehabilitation process. Embracing rehabilitation or other adaptations doesn’t mean you surrender hope of recovery. It means you recognize that it is the best you can do right now. Should the hoped-for recovery be on its way, full participation in therapy will ensure that you are in optimal health and in the best position to take advantage of it.

Real hope isn’t limited to the hope for a full recovery. You might hope you will still be able to pursue the career you want, hope you’ll still be able to participate in some of the activities you love, hope you’ll find a really great personal attendant, or hope you can learn to pop wheelies as well as some experienced riders you’ve seen. Your hopes can help bring into focus what is truly important to you and, therefore, help you make it happen. The ancient Roman poet Ovid had the right idea: “My hopes are not always realized, but I always hope.”

There will be people who will try to get you to “accept” your disability, as if it is just a simple decision that you make and then are done with it. It is not just an intellectual choice; it is a process. Not only is there a complex set of inner forces at play, but acceptance is supposed to take time. What you learn along the way is worthwhile.

Well-trained medical staff know that people need to be allowed their natural emotional responses and will try to help family members understand this as well. That response might include a refusal to initially accept a new disability.

Attitudes do change. You can reach a balance appropriate for you, as happened for this spinal cord-injured man:

Acceptance doesn’t have to mean you’re happy about having a disability. It means you accommodate its needs so it won’t compromise the quality of your life any more than necessary, if at all. Resisting acceptance implies there is some preferred state, other than the one you are in, or some way to resolve your situation. Buddhist nun Pema Chodron describes seeking resolution this way:

Acceptance includes the willingness to let go of always having answers and wanting things to be “solved.” It is possible to recognize that things are out of control and still find a way to relax in the face of chaos. The ultimate message: given the hard reality of your loss, why multiply the loss by denying yourself what remains possible?

You might be surprised at having the ability to laugh about your disability experience. Having a disability does not erase your sense of humor. If anything, it enhances your sense of irony that is the root of much humor. Even tentative humor in the initial stages of adapting can reassure you that things are going to get better. Laughter is healing.

Joking about disability makes some people uncomfortable. They are so used to thinking of disability as tragic that to joke about it seems cruel. You will undoubtedly feel more at ease with such humor than the nondisabled people around you. For instance, John Callahan is quadriplegic from a spinal cord injury and is well known for his sometimes-skewed humor about disability. He has drawn many published cartoons, now collected in several books, and has also written a book on his own disability experience,
Don’t Worry, He Won’t Get Far on Foot
. Another rider collects disability one-liners to use in various situations:

You can find plenty of examples of humor in daily life:

Reynolds Price is a writer who faced an extended experience fighting cancer, which included paralysis. In his book
A Whole New Life
, he writes:

Your disability need not be off limits to humor. Your friends can become comfortable with where the boundaries are on joking about your disability. Spend time with friends you enjoy, and let them know they don’t need to restrain themselves on your behalf.

The need for medical treatment and therapy for a person with a new disability is obvious. Your inner self is equally deserving of support, helping see you through the initial emotional trauma of injury or diagnosis and helping you gain increasingly deeper insight as you live with disability. Common sources of emotional support include family and friends, colleagues and peers from work, support groups, and psychological counseling.

The emotional support of family and friends not only is a tremendous comfort, but helps get you through the initial process of grieving and adjustment. If you are lucky enough to have strong support from the people closest to you, don’t be reluctant to let them help. Because they know you so well, you can get to the heart of what you are feeling without having to explain a lot of background about who you are. Trust is already there, so you don’t have to feel as cautious about exposing your deepest emotions. You also get reinforcement for the ways in which you are still the same person now in the context of your disability. You learn that your disability is not who you are but is one of many things that makes up your identity. Many people come to recognize that the disability is not only one of loss, but also includes unique lessons they might not have otherwise gained in their life. The quality of your relationships and the emotional support they provide has much to do with this process. This man with C5 quadriplegia recalls:

Unfortunately, not all family members and friends will be able to offer ideal emotional support, especially not at first. They might be having their own difficulty coping with what has happened to you and may need emotional support, too. It’s important that you don’t feel responsible for their emotional needs. That can be a temptation—and a drain. In rare cases, family or friends will have to take time away from you in order to make their own emotional adjustments.